id	sid	tid	token	lemma	pos
ihlr-22948	1	1	patient	patient	ADJ
ihlr-22948	1	2	registries	registry	NOUN
ihlr-22948	1	3	and	and	CCONJ
ihlr-22948	1	4	their	their	PRON
ihlr-22948	1	5	governance	governance	NOUN
ihlr-22948	1	6	:	:	PUNCT
ihlr-22948	1	7	a	a	DET
ihlr-22948	1	8	pilot	pilot	NOUN
ihlr-22948	1	9	study	study	NOUN
ihlr-22948	1	10	and	and	CCONJ
ihlr-22948	1	11	recommendations	recommendation	NOUN
ihlr-22948	1	12	*	*	PUNCT
ihlr-22948	1	13	leslie	leslie	PROPN
ihlr-22948	1	14	p.	p.	PROPN
ihlr-22948	1	15	francis	francis	PROPN
ihlr-22948	2	1	*	*	PROPN
ihlr-22948	2	2	*	*	PROPN
ihlr-22948	2	3	michael	michael	PROPN
ihlr-22948	2	4	squires	squires	PROPN
ihlr-22948	2	5	*	*	PROPN
ihlr-22948	2	6	*	*	PROPN
ihlr-22948	2	7	*	*	PUNCT
ihlr-22948	2	8	i.	i.	NOUN
ihlr-22948	2	9	introduction	introduction	NOUN
ihlr-22948	2	10	patient	patient	NOUN
ihlr-22948	2	11	registries	registry	NOUN
ihlr-22948	2	12	collect	collect	VERB
ihlr-22948	2	13	information	information	NOUN
ihlr-22948	2	14	in	in	ADP
ihlr-22948	2	15	a	a	DET
ihlr-22948	2	16	systematic	systematic	ADJ
ihlr-22948	2	17	way	way	NOUN
ihlr-22948	2	18	about	about	ADP
ihlr-22948	2	19	individuals	individual	NOUN
ihlr-22948	2	20	who	who	PRON
ihlr-22948	2	21	share	share	VERB
ihlr-22948	2	22	a	a	DET
ihlr-22948	2	23	particular	particular	ADJ
ihlr-22948	2	24	feature	feature	NOUN
ihlr-22948	2	25	of	of	ADP
ihlr-22948	2	26	medical	medical	ADJ
ihlr-22948	2	27	interest	interest	NOUN
ihlr-22948	2	28	.	.	PUNCT
ihlr-22948	3	1	as	as	ADP
ihlr-22948	3	2	such	such	ADJ
ihlr-22948	3	3	,	,	PUNCT
ihlr-22948	3	4	they	they	PRON
ihlr-22948	3	5	may	may	AUX
ihlr-22948	3	6	provide	provide	VERB
ihlr-22948	3	7	critical	critical	ADJ
ihlr-22948	3	8	resources	resource	NOUN
ihlr-22948	3	9	for	for	ADP
ihlr-22948	3	10	medical	medical	ADJ
ihlr-22948	3	11	research	research	NOUN
ihlr-22948	3	12	,	,	PUNCT
ihlr-22948	3	13	for	for	ADP
ihlr-22948	3	14	improving	improve	VERB
ihlr-22948	3	15	health	health	NOUN
ihlr-22948	3	16	care	care	NOUN
ihlr-22948	3	17	,	,	PUNCT
ihlr-22948	3	18	for	for	ADP
ihlr-22948	3	19	public	public	ADJ
ihlr-22948	3	20	health	health	NOUN
ihlr-22948	3	21	,	,	PUNCT
ihlr-22948	3	22	or	or	CCONJ
ihlr-22948	3	23	for	for	ADP
ihlr-22948	3	24	other	other	ADJ
ihlr-22948	3	25	purposes	purpose	NOUN
ihlr-22948	3	26	.	.	PUNCT
ihlr-22948	4	1	registries	registry	NOUN
ihlr-22948	4	2	vary	vary	VERB
ihlr-22948	4	3	in	in	ADP
ihlr-22948	4	4	many	many	ADJ
ihlr-22948	4	5	important	important	ADJ
ihlr-22948	4	6	ways	way	NOUN
ihlr-22948	4	7	.	.	PUNCT
ihlr-22948	5	1	registries	registry	NOUN
ihlr-22948	5	2	may	may	AUX
ihlr-22948	5	3	be	be	AUX
ihlr-22948	5	4	devoted	devote	VERB
ihlr-22948	5	5	to	to	ADP
ihlr-22948	5	6	specific	specific	ADJ
ihlr-22948	5	7	conditions	condition	NOUN
ihlr-22948	5	8	such	such	ADJ
ihlr-22948	5	9	as	as	ADP
ihlr-22948	5	10	cystic	cystic	ADJ
ihlr-22948	5	11	fibrosis	fibrosis	NOUN
ihlr-22948	5	12	(	(	PUNCT
ihlr-22948	5	13	“	"	PUNCT
ihlr-22948	5	14	cf	cf	NOUN
ihlr-22948	5	15	”	"	PUNCT
ihlr-22948	5	16	)	)	PUNCT
ihlr-22948	5	17	or	or	CCONJ
ihlr-22948	5	18	pompe	pompe	PROPN
ihlr-22948	5	19	disease	disease	NOUN
ihlr-22948	5	20	.	.	PUNCT
ihlr-22948	6	1	they	they	PRON
ihlr-22948	6	2	may	may	AUX
ihlr-22948	6	3	gather	gather	VERB
ihlr-22948	6	4	information	information	NOUN
ihlr-22948	6	5	about	about	ADP
ihlr-22948	6	6	patients	patient	NOUN
ihlr-22948	6	7	who	who	PRON
ihlr-22948	6	8	have	have	AUX
ihlr-22948	6	9	received	receive	VERB
ihlr-22948	6	10	particular	particular	ADJ
ihlr-22948	6	11	medical	medical	ADJ
ihlr-22948	6	12	devices	device	NOUN
ihlr-22948	6	13	such	such	ADJ
ihlr-22948	6	14	as	as	ADP
ihlr-22948	6	15	pacemakers	pacemaker	NOUN
ihlr-22948	6	16	or	or	CCONJ
ihlr-22948	6	17	joint	joint	ADJ
ihlr-22948	6	18	replacements	replacement	NOUN
ihlr-22948	6	19	.	.	PUNCT
ihlr-22948	7	1	some	some	DET
ihlr-22948	7	2	registries	registry	NOUN
ihlr-22948	7	3	such	such	ADJ
ihlr-22948	7	4	as	as	ADP
ihlr-22948	7	5	tumor	tumor	NOUN
ihlr-22948	7	6	registries	registry	NOUN
ihlr-22948	7	7	or	or	CCONJ
ihlr-22948	7	8	vaccination	vaccination	NOUN
ihlr-22948	7	9	registries	registry	NOUN
ihlr-22948	7	10	are	be	AUX
ihlr-22948	7	11	maintained	maintain	VERB
ihlr-22948	7	12	by	by	ADP
ihlr-22948	7	13	state	state	NOUN
ihlr-22948	7	14	public	public	ADJ
ihlr-22948	7	15	health	health	NOUN
ihlr-22948	7	16	departments	department	NOUN
ihlr-22948	7	17	.	.	PUNCT
ihlr-22948	8	1	others	other	NOUN
ihlr-22948	8	2	are	be	AUX
ihlr-22948	8	3	maintained	maintain	VERB
ihlr-22948	8	4	by	by	ADP
ihlr-22948	8	5	non	non	NOUN
ihlr-22948	8	6	-	-	NOUN
ihlr-22948	8	7	profits	profit	NOUN
ihlr-22948	8	8	,	,	PUNCT
ihlr-22948	8	9	professional	professional	ADJ
ihlr-22948	8	10	organizations	organization	NOUN
ihlr-22948	8	11	,	,	PUNCT
ihlr-22948	8	12	or	or	CCONJ
ihlr-22948	8	13	academic	academic	ADJ
ihlr-22948	8	14	medical	medical	ADJ
ihlr-22948	8	15	centers	center	NOUN
ihlr-22948	8	16	.	.	PUNCT
ihlr-22948	9	1	still	still	ADV
ihlr-22948	9	2	others	other	NOUN
ihlr-22948	9	3	are	be	AUX
ihlr-22948	9	4	maintained	maintain	VERB
ihlr-22948	9	5	by	by	ADP
ihlr-22948	9	6	pharmaceutical	pharmaceutical	NOUN
ihlr-22948	9	7	companies	company	NOUN
ihlr-22948	9	8	or	or	CCONJ
ihlr-22948	9	9	medical	medical	ADJ
ihlr-22948	9	10	device	device	NOUN
ihlr-22948	9	11	manufacturers	manufacturer	NOUN
ihlr-22948	9	12	.	.	PUNCT
ihlr-22948	10	1	some	some	DET
ihlr-22948	10	2	registries	registry	NOUN
ihlr-22948	10	3	are	be	AUX
ihlr-22948	10	4	established	establish	VERB
ihlr-22948	10	5	specifically	specifically	ADV
ihlr-22948	10	6	for	for	ADP
ihlr-22948	10	7	research	research	NOUN
ihlr-22948	10	8	purposes	purpose	NOUN
ihlr-22948	10	9	and	and	CCONJ
ihlr-22948	10	10	approved	approve	VERB
ihlr-22948	10	11	according	accord	VERB
ihlr-22948	10	12	to	to	ADP
ihlr-22948	10	13	the	the	DET
ihlr-22948	10	14	federal	federal	ADJ
ihlr-22948	10	15	regulations	regulation	NOUN
ihlr-22948	10	16	governing	govern	VERB
ihlr-22948	10	17	research	research	NOUN
ihlr-22948	10	18	with	with	ADP
ihlr-22948	10	19	human	human	ADJ
ihlr-22948	10	20	subjects	subject	NOUN
ihlr-22948	10	21	,	,	PUNCT
ihlr-22948	10	22	while	while	SCONJ
ihlr-22948	10	23	others	other	NOUN
ihlr-22948	10	24	serve	serve	VERB
ihlr-22948	10	25	primarily	primarily	ADV
ihlr-22948	10	26	to	to	ADP
ihlr-22948	10	27	network	network	NOUN
ihlr-22948	10	28	patients	patient	NOUN
ihlr-22948	10	29	and	and	CCONJ
ihlr-22948	10	30	their	their	PRON
ihlr-22948	10	31	families	family	NOUN
ihlr-22948	10	32	.	.	PUNCT
ihlr-22948	11	1	some	some	DET
ihlr-22948	11	2	glean	glean	ADJ
ihlr-22948	11	3	data	datum	NOUN
ihlr-22948	11	4	from	from	ADP
ihlr-22948	11	5	patient	patient	ADJ
ihlr-22948	11	6	records	record	NOUN
ihlr-22948	11	7	and	and	CCONJ
ihlr-22948	11	8	may	may	AUX
ihlr-22948	11	9	continue	continue	VERB
ihlr-22948	11	10	to	to	PART
ihlr-22948	11	11	be	be	AUX
ihlr-22948	11	12	covered	cover	VERB
ihlr-22948	11	13	by	by	ADP
ihlr-22948	11	14	the	the	DET
ihlr-22948	11	15	federal	federal	PROPN
ihlr-22948	11	16	privacy	privacy	NOUN
ihlr-22948	11	17	and	and	CCONJ
ihlr-22948	11	18	security	security	NOUN
ihlr-22948	11	19	rules	rule	NOUN
ihlr-22948	11	20	for	for	ADP
ihlr-22948	11	21	protecting	protect	VERB
ihlr-22948	11	22	health	health	NOUN
ihlr-22948	11	23	information	information	NOUN
ihlr-22948	11	24	.	.	PUNCT
ihlr-22948	12	1	others	other	NOUN
ihlr-22948	12	2	may	may	AUX
ihlr-22948	12	3	gather	gather	VERB
ihlr-22948	12	4	information	information	NOUN
ihlr-22948	12	5	from	from	ADP
ihlr-22948	12	6	patients	patient	NOUN
ihlr-22948	12	7	themselves	themselves	PRON
ihlr-22948	12	8	or	or	CCONJ
ihlr-22948	12	9	from	from	ADP
ihlr-22948	12	10	other	other	ADJ
ihlr-22948	12	11	sources	source	NOUN
ihlr-22948	12	12	beyond	beyond	ADP
ihlr-22948	12	13	the	the	DET
ihlr-22948	12	14	scope	scope	NOUN
ihlr-22948	12	15	of	of	ADP
ihlr-22948	12	16	these	these	DET
ihlr-22948	12	17	protections	protection	NOUN
ihlr-22948	12	18	.	.	PUNCT
ihlr-22948	13	1	registries	registry	NOUN
ihlr-22948	13	2	also	also	ADV
ihlr-22948	13	3	differ	differ	VERB
ihlr-22948	13	4	in	in	ADP
ihlr-22948	13	5	how	how	SCONJ
ihlr-22948	13	6	they	they	PRON
ihlr-22948	13	7	use	use	VERB
ihlr-22948	13	8	and	and	CCONJ
ihlr-22948	13	9	protect	protect	VERB
ihlr-22948	13	10	the	the	DET
ihlr-22948	13	11	information	information	NOUN
ihlr-22948	13	12	they	they	PRON
ihlr-22948	13	13	contain	contain	VERB
ihlr-22948	13	14	.	.	PUNCT
ihlr-22948	14	1	that	that	PRON
ihlr-22948	14	2	is	is	ADV
ihlr-22948	14	3	,	,	PUNCT
ihlr-22948	14	4	they	they	PRON
ihlr-22948	14	5	engage	engage	VERB
ihlr-22948	14	6	in	in	ADP
ihlr-22948	14	7	quite	quite	ADV
ihlr-22948	14	8	different	different	ADJ
ihlr-22948	14	9	practices	practice	NOUN
ihlr-22948	14	10	of	of	ADP
ihlr-22948	14	11	governance	governance	NOUN
ihlr-22948	14	12	and	and	CCONJ
ihlr-22948	14	13	data	datum	NOUN
ihlr-22948	14	14	stewardship	stewardship	NOUN
ihlr-22948	14	15	.	.	PUNCT
ihlr-22948	15	1	this	this	DET
ihlr-22948	15	2	article	article	NOUN
ihlr-22948	15	3	presents	present	VERB
ihlr-22948	15	4	data	datum	NOUN
ihlr-22948	15	5	from	from	ADP
ihlr-22948	15	6	a	a	DET
ihlr-22948	15	7	pilot	pilot	NOUN
ihlr-22948	15	8	study	study	NOUN
ihlr-22948	15	9	of	of	ADP
ihlr-22948	15	10	a	a	DET
ihlr-22948	15	11	selected	select	VERB
ihlr-22948	15	12	group	group	NOUN
ihlr-22948	15	13	of	of	ADP
ihlr-22948	15	14	patient	patient	ADJ
ihlr-22948	15	15	registries	registry	NOUN
ihlr-22948	15	16	about	about	ADP
ihlr-22948	15	17	their	their	PRON
ihlr-22948	15	18	practices	practice	NOUN
ihlr-22948	15	19	of	of	ADP
ihlr-22948	15	20	governance	governance	NOUN
ihlr-22948	15	21	and	and	CCONJ
ihlr-22948	15	22	date	date	NOUN
ihlr-22948	15	23	stewardship	stewardship	NOUN
ihlr-22948	15	24	.	.	PUNCT
ihlr-22948	16	1	although	although	SCONJ
ihlr-22948	16	2	some	some	PRON
ihlr-22948	16	3	of	of	ADP
ihlr-22948	16	4	the	the	DET
ihlr-22948	16	5	registries	registry	NOUN
ihlr-22948	16	6	surveyed	survey	VERB
ihlr-22948	16	7	have	have	AUX
ihlr-22948	16	8	implemented	implement	VERB
ihlr-22948	16	9	robust	robust	ADJ
ihlr-22948	16	10	practices	practice	NOUN
ihlr-22948	16	11	of	of	ADP
ihlr-22948	16	12	data	datum	NOUN
ihlr-22948	16	13	stewardship	stewardship	NOUN
ihlr-22948	16	14	,	,	PUNCT
ihlr-22948	16	15	others	other	NOUN
ihlr-22948	16	16	have	have	VERB
ihlr-22948	16	17	not	not	PART
ihlr-22948	16	18	.	.	PUNCT
ihlr-22948	17	1	the	the	DET
ihlr-22948	17	2	article	article	NOUN
ihlr-22948	17	3	concludes	conclude	VERB
ihlr-22948	17	4	with	with	ADP
ihlr-22948	17	5	preliminary	preliminary	ADJ
ihlr-22948	17	6	recommendations	recommendation	NOUN
ihlr-22948	17	7	for	for	ADP
ihlr-22948	17	8	improvements	improvement	NOUN
ihlr-22948	17	9	based	base	VERB
ihlr-22948	17	10	on	on	ADP
ihlr-22948	17	11	these	these	DET
ihlr-22948	17	12	findings	finding	NOUN
ihlr-22948	17	13	.	.	PUNCT
ihlr-22948	18	1	ii	ii	PROPN
ihlr-22948	18	2	.	.	PUNCT
ihlr-22948	19	1	patient	patient	ADJ
ihlr-22948	19	2	registries	registry	NOUN
ihlr-22948	19	3	this	this	DET
ihlr-22948	19	4	section	section	NOUN
ihlr-22948	19	5	provides	provide	VERB
ihlr-22948	19	6	an	an	DET
ihlr-22948	19	7	overview	overview	NOUN
ihlr-22948	19	8	of	of	ADP
ihlr-22948	19	9	what	what	PRON
ihlr-22948	19	10	a	a	DET
ihlr-22948	19	11	registry	registry	NOUN
ihlr-22948	19	12	is	be	AUX
ihlr-22948	19	13	and	and	CCONJ
ihlr-22948	19	14	the	the	DET
ihlr-22948	19	15	myriad	myriad	ADJ
ihlr-22948	19	16	*	*	PUNCT
ihlr-22948	19	17	research	research	NOUN
ihlr-22948	19	18	reported	report	VERB
ihlr-22948	19	19	in	in	ADP
ihlr-22948	19	20	this	this	DET
ihlr-22948	19	21	publication	publication	NOUN
ihlr-22948	19	22	was	be	AUX
ihlr-22948	19	23	supported	support	VERB
ihlr-22948	19	24	by	by	ADP
ihlr-22948	19	25	utah	utah	PROPN
ihlr-22948	19	26	center	center	PROPN
ihlr-22948	19	27	for	for	ADP
ihlr-22948	19	28	excellence	excellence	NOUN
ihlr-22948	19	29	in	in	ADP
ihlr-22948	19	30	elsi	elsi	ADJ
ihlr-22948	19	31	research	research	NOUN
ihlr-22948	19	32	(	(	PUNCT
ihlr-22948	19	33	“	"	PUNCT
ihlr-22948	19	34	uceer	uceer	NOUN
ihlr-22948	19	35	”	"	PUNCT
ihlr-22948	19	36	)	)	PUNCT
ihlr-22948	19	37	.	.	PUNCT
ihlr-22948	20	1	uceer	uceer	NOUN
ihlr-22948	20	2	is	be	AUX
ihlr-22948	20	3	supported	support	VERB
ihlr-22948	20	4	by	by	ADP
ihlr-22948	20	5	the	the	DET
ihlr-22948	20	6	national	national	ADJ
ihlr-22948	20	7	human	human	PROPN
ihlr-22948	20	8	genome	genome	NOUN
ihlr-22948	20	9	research	research	NOUN
ihlr-22948	20	10	institute	institute	NOUN
ihlr-22948	20	11	of	of	ADP
ihlr-22948	20	12	the	the	DET
ihlr-22948	20	13	national	national	PROPN
ihlr-22948	20	14	institutes	institutes	PROPN
ihlr-22948	20	15	of	of	ADP
ihlr-22948	20	16	health	health	PROPN
ihlr-22948	20	17	under	under	ADP
ihlr-22948	20	18	award	award	NOUN
ihlr-22948	20	19	number	number	NOUN
ihlr-22948	20	20	rm1hg009037	rm1hg009037	PROPN
ihlr-22948	20	21	.	.	PUNCT
ihlr-22948	21	1	the	the	DET
ihlr-22948	21	2	content	content	NOUN
ihlr-22948	21	3	is	be	AUX
ihlr-22948	21	4	solely	solely	ADV
ihlr-22948	21	5	the	the	DET
ihlr-22948	21	6	responsibility	responsibility	NOUN
ihlr-22948	21	7	of	of	ADP
ihlr-22948	21	8	the	the	DET
ihlr-22948	21	9	authors	author	NOUN
ihlr-22948	21	10	and	and	CCONJ
ihlr-22948	21	11	does	do	AUX
ihlr-22948	21	12	not	not	PART
ihlr-22948	21	13	necessarily	necessarily	ADV
ihlr-22948	21	14	represent	represent	VERB
ihlr-22948	21	15	the	the	DET
ihlr-22948	21	16	official	official	ADJ
ihlr-22948	21	17	views	view	NOUN
ihlr-22948	21	18	of	of	ADP
ihlr-22948	21	19	the	the	DET
ihlr-22948	21	20	national	national	PROPN
ihlr-22948	21	21	institutes	institutes	PROPN
ihlr-22948	21	22	of	of	ADP
ihlr-22948	21	23	health	health	NOUN
ihlr-22948	21	24	.	.	PUNCT
ihlr-22948	22	1	*	*	PUNCT
ihlr-22948	22	2	*	*	PUNCT
ihlr-22948	22	3	j.d	j.d	PROPN
ihlr-22948	22	4	.	.	PROPN
ihlr-22948	22	5	,	,	PUNCT
ihlr-22948	22	6	ph.d	ph.d	PROPN
ihlr-22948	22	7	.	.	PROPN
ihlr-22948	22	8	,	,	PUNCT
ihlr-22948	22	9	distinguished	distinguished	PROPN
ihlr-22948	22	10	alfred	alfred	PROPN
ihlr-22948	22	11	c.	c.	PROPN
ihlr-22948	22	12	emery	emery	PROPN
ihlr-22948	22	13	professor	professor	PROPN
ihlr-22948	22	14	of	of	ADP
ihlr-22948	22	15	law	law	NOUN
ihlr-22948	22	16	,	,	PUNCT
ihlr-22948	22	17	university	university	PROPN
ihlr-22948	22	18	of	of	ADP
ihlr-22948	22	19	utah	utah	PROPN
ihlr-22948	22	20	s.j	s.j	PROPN
ihlr-22948	22	21	.	.	PROPN
ihlr-22948	23	1	quinney	quinney	PROPN
ihlr-22948	23	2	college	college	PROPN
ihlr-22948	23	3	of	of	ADP
ihlr-22948	23	4	law	law	NOUN
ihlr-22948	23	5	;	;	PUNCT
ihlr-22948	23	6	distinguished	distinguished	ADJ
ihlr-22948	23	7	professor	professor	NOUN
ihlr-22948	23	8	of	of	ADP
ihlr-22948	23	9	philosophy	philosophy	NOUN
ihlr-22948	23	10	,	,	PUNCT
ihlr-22948	23	11	university	university	PROPN
ihlr-22948	23	12	of	of	ADP
ihlr-22948	23	13	utah	utah	PROPN
ihlr-22948	23	14	;	;	PUNCT
ihlr-22948	23	15	director	director	NOUN
ihlr-22948	23	16	,	,	PUNCT
ihlr-22948	23	17	center	center	NOUN
ihlr-22948	23	18	for	for	ADP
ihlr-22948	23	19	law	law	NOUN
ihlr-22948	23	20	&	&	CCONJ
ihlr-22948	23	21	biomedical	biomedical	PROPN
ihlr-22948	23	22	sciences	sciences	PROPN
ihlr-22948	23	23	,	,	PUNCT
ihlr-22948	23	24	university	university	NOUN
ihlr-22948	23	25	of	of	ADP
ihlr-22948	23	26	utah	utah	PROPN
ihlr-22948	23	27	.	.	PUNCT
ihlr-22948	24	1	*	*	PUNCT
ihlr-22948	24	2	*	*	PUNCT
ihlr-22948	24	3	*	*	PUNCT
ihlr-22948	24	4	j.d	j.d	PROPN
ihlr-22948	24	5	.	.	PROPN
ihlr-22948	24	6	,	,	PUNCT
ihlr-22948	24	7	director	director	NOUN
ihlr-22948	24	8	of	of	ADP
ihlr-22948	24	9	government	government	NOUN
ihlr-22948	24	10	affairs	affair	NOUN
ihlr-22948	24	11	,	,	PUNCT
ihlr-22948	24	12	utah	utah	PROPN
ihlr-22948	24	13	associated	associate	VERB
ihlr-22948	24	14	municipal	municipal	ADJ
ihlr-22948	24	15	power	power	NOUN
ihlr-22948	24	16	systems	system	NOUN
ihlr-22948	24	17	(	(	PUNCT
ihlr-22948	24	18	uamps	uamp	NOUN
ihlr-22948	24	19	)	)	PUNCT
ihlr-22948	24	20	.	.	PUNCT
ihlr-22948	25	1	http://doi.org/10.18060/3911.0054	http://doi.org/10.18060/3911.0054	PROPN
ihlr-22948	26	1	44	44	NUM
ihlr-22948	26	2	indiana	indiana	PROPN
ihlr-22948	26	3	health	health	PROPN
ihlr-22948	26	4	law	law	PROPN
ihlr-22948	26	5	review	review	NOUN
ihlr-22948	27	1	[	[	X
ihlr-22948	27	2	vol	vol	NOUN
ihlr-22948	27	3	.	.	PUNCT
ihlr-22948	28	1	16:43	16:43	NUM
ihlr-22948	28	2	variations	variation	NOUN
ihlr-22948	28	3	of	of	ADP
ihlr-22948	28	4	registries	registry	NOUN
ihlr-22948	28	5	that	that	PRON
ihlr-22948	28	6	exist	exist	VERB
ihlr-22948	28	7	today	today	NOUN
ihlr-22948	28	8	.	.	PUNCT
ihlr-22948	29	1	a.	a.	NOUN
ihlr-22948	30	1	what	what	PRON
ihlr-22948	30	2	are	be	AUX
ihlr-22948	30	3	registries	registry	NOUN
ihlr-22948	30	4	?	?	PUNCT
ihlr-22948	31	1	patient	patient	ADJ
ihlr-22948	31	2	registries	registry	NOUN
ihlr-22948	31	3	are	be	AUX
ihlr-22948	31	4	difficult	difficult	ADJ
ihlr-22948	31	5	to	to	PART
ihlr-22948	31	6	define	define	VERB
ihlr-22948	31	7	precisely	precisely	ADV
ihlr-22948	31	8	because	because	SCONJ
ihlr-22948	31	9	they	they	PRON
ihlr-22948	31	10	appear	appear	VERB
ihlr-22948	31	11	in	in	ADP
ihlr-22948	31	12	so	so	ADV
ihlr-22948	31	13	many	many	ADJ
ihlr-22948	31	14	different	different	ADJ
ihlr-22948	31	15	forms	form	NOUN
ihlr-22948	31	16	.	.	PUNCT
ihlr-22948	32	1	the	the	DET
ihlr-22948	32	2	agency	agency	NOUN
ihlr-22948	32	3	for	for	ADP
ihlr-22948	32	4	healthcare	healthcare	PROPN
ihlr-22948	32	5	research	research	NOUN
ihlr-22948	32	6	and	and	CCONJ
ihlr-22948	32	7	quality	quality	NOUN
ihlr-22948	32	8	(	(	PUNCT
ihlr-22948	32	9	“	"	PUNCT
ihlr-22948	32	10	ahrq	ahrq	PROPN
ihlr-22948	32	11	”	"	PUNCT
ihlr-22948	32	12	)	)	PUNCT
ihlr-22948	32	13	offers	offer	VERB
ihlr-22948	32	14	this	this	DET
ihlr-22948	32	15	formal	formal	ADJ
ihlr-22948	32	16	definition	definition	NOUN
ihlr-22948	32	17	of	of	ADP
ihlr-22948	32	18	a	a	DET
ihlr-22948	32	19	patient	patient	ADJ
ihlr-22948	32	20	registry	registry	NOUN
ihlr-22948	32	21	:	:	PUNCT
ihlr-22948	32	22	“	"	PUNCT
ihlr-22948	32	23	an	an	DET
ihlr-22948	32	24	organized	organize	VERB
ihlr-22948	32	25	system	system	NOUN
ihlr-22948	32	26	that	that	PRON
ihlr-22948	32	27	uses	use	VERB
ihlr-22948	32	28	observational	observational	ADJ
ihlr-22948	32	29	study	study	NOUN
ihlr-22948	32	30	methods	method	NOUN
ihlr-22948	32	31	to	to	PART
ihlr-22948	32	32	collect	collect	VERB
ihlr-22948	32	33	uniform	uniform	ADJ
ihlr-22948	32	34	data	datum	NOUN
ihlr-22948	32	35	(	(	PUNCT
ihlr-22948	32	36	clinical	clinical	ADJ
ihlr-22948	32	37	and	and	CCONJ
ihlr-22948	32	38	other	other	ADJ
ihlr-22948	32	39	)	)	PUNCT
ihlr-22948	32	40	to	to	PART
ihlr-22948	32	41	evaluate	evaluate	VERB
ihlr-22948	32	42	specified	specify	VERB
ihlr-22948	32	43	outcomes	outcome	NOUN
ihlr-22948	32	44	for	for	ADP
ihlr-22948	32	45	a	a	DET
ihlr-22948	32	46	population	population	NOUN
ihlr-22948	32	47	defined	define	VERB
ihlr-22948	32	48	by	by	ADP
ihlr-22948	32	49	a	a	DET
ihlr-22948	32	50	particular	particular	ADJ
ihlr-22948	32	51	disease	disease	NOUN
ihlr-22948	32	52	,	,	PUNCT
ihlr-22948	32	53	condition	condition	NOUN
ihlr-22948	32	54	,	,	PUNCT
ihlr-22948	32	55	or	or	CCONJ
ihlr-22948	32	56	exposure	exposure	NOUN
ihlr-22948	32	57	,	,	PUNCT
ihlr-22948	32	58	and	and	CCONJ
ihlr-22948	32	59	that	that	PRON
ihlr-22948	32	60	serves	serve	VERB
ihlr-22948	32	61	one	one	NUM
ihlr-22948	32	62	or	or	CCONJ
ihlr-22948	32	63	more	more	ADJ
ihlr-22948	32	64	predetermined	predetermined	ADJ
ihlr-22948	32	65	scientific	scientific	ADJ
ihlr-22948	32	66	,	,	PUNCT
ihlr-22948	32	67	clinical	clinical	ADJ
ihlr-22948	32	68	,	,	PUNCT
ihlr-22948	32	69	or	or	CCONJ
ihlr-22948	32	70	policy	policy	NOUN
ihlr-22948	32	71	purposes	purpose	NOUN
ihlr-22948	32	72	.	.	PUNCT
ihlr-22948	32	73	”1	”1	PUNCT
ihlr-22948	33	1	this	this	DET
ihlr-22948	33	2	definition	definition	NOUN
ihlr-22948	33	3	would	would	AUX
ihlr-22948	33	4	encompass	encompass	VERB
ihlr-22948	33	5	only	only	ADV
ihlr-22948	33	6	a	a	DET
ihlr-22948	33	7	limited	limited	ADJ
ihlr-22948	33	8	subset	subset	NOUN
ihlr-22948	33	9	of	of	ADP
ihlr-22948	33	10	the	the	DET
ihlr-22948	33	11	entities	entity	NOUN
ihlr-22948	33	12	described	describe	VERB
ihlr-22948	33	13	as	as	ADP
ihlr-22948	33	14	patient	patient	ADJ
ihlr-22948	33	15	registries	registry	NOUN
ihlr-22948	33	16	today	today	NOUN
ihlr-22948	33	17	and	and	CCONJ
ihlr-22948	33	18	performing	perform	VERB
ihlr-22948	33	19	at	at	ADP
ihlr-22948	33	20	least	least	ADJ
ihlr-22948	33	21	some	some	PRON
ihlr-22948	33	22	of	of	ADP
ihlr-22948	33	23	the	the	DET
ihlr-22948	33	24	functions	function	NOUN
ihlr-22948	33	25	of	of	ADP
ihlr-22948	33	26	registries	registry	NOUN
ihlr-22948	33	27	.	.	PUNCT
ihlr-22948	34	1	many	many	ADJ
ihlr-22948	34	2	of	of	ADP
ihlr-22948	34	3	the	the	DET
ihlr-22948	34	4	registries	registry	NOUN
ihlr-22948	34	5	in	in	ADP
ihlr-22948	34	6	the	the	DET
ihlr-22948	34	7	clinical	clinical	ADJ
ihlr-22948	34	8	research	research	NOUN
ihlr-22948	34	9	and	and	CCONJ
ihlr-22948	34	10	disease	disease	NOUN
ihlr-22948	34	11	communities	community	NOUN
ihlr-22948	34	12	meet	meet	VERB
ihlr-22948	34	13	the	the	DET
ihlr-22948	34	14	characteristics	characteristic	NOUN
ihlr-22948	34	15	of	of	ADP
ihlr-22948	34	16	this	this	DET
ihlr-22948	34	17	definition	definition	NOUN
ihlr-22948	34	18	,	,	PUNCT
ihlr-22948	34	19	but	but	CCONJ
ihlr-22948	34	20	others	other	NOUN
ihlr-22948	34	21	do	do	AUX
ihlr-22948	34	22	not	not	PART
ihlr-22948	34	23	in	in	ADP
ihlr-22948	34	24	at	at	ADV
ihlr-22948	34	25	least	least	ADJ
ihlr-22948	34	26	some	some	PRON
ihlr-22948	34	27	respects	respect	NOUN
ihlr-22948	34	28	.	.	PUNCT
ihlr-22948	35	1	to	to	PART
ihlr-22948	35	2	grasp	grasp	VERB
ihlr-22948	35	3	a	a	DET
ihlr-22948	35	4	fuller	full	ADJ
ihlr-22948	35	5	picture	picture	NOUN
ihlr-22948	35	6	of	of	ADP
ihlr-22948	35	7	the	the	DET
ihlr-22948	35	8	registry	registry	NOUN
ihlr-22948	35	9	world	world	NOUN
ihlr-22948	35	10	and	and	CCONJ
ihlr-22948	35	11	how	how	SCONJ
ihlr-22948	35	12	data	datum	NOUN
ihlr-22948	35	13	is	be	AUX
ihlr-22948	35	14	used	use	VERB
ihlr-22948	35	15	within	within	ADP
ihlr-22948	35	16	it	it	PRON
ihlr-22948	35	17	,	,	PUNCT
ihlr-22948	35	18	it	it	PRON
ihlr-22948	35	19	is	be	AUX
ihlr-22948	35	20	critical	critical	ADJ
ihlr-22948	35	21	to	to	PART
ihlr-22948	35	22	extend	extend	VERB
ihlr-22948	35	23	the	the	DET
ihlr-22948	35	24	universe	universe	NOUN
ihlr-22948	35	25	more	more	ADV
ihlr-22948	35	26	widely	widely	ADV
ihlr-22948	35	27	to	to	PART
ihlr-22948	35	28	include	include	VERB
ihlr-22948	35	29	the	the	DET
ihlr-22948	35	30	range	range	NOUN
ihlr-22948	35	31	of	of	ADP
ihlr-22948	35	32	efforts	effort	NOUN
ihlr-22948	35	33	to	to	PART
ihlr-22948	35	34	collect	collect	VERB
ihlr-22948	35	35	a	a	DET
ihlr-22948	35	36	variety	variety	NOUN
ihlr-22948	35	37	of	of	ADP
ihlr-22948	35	38	information	information	NOUN
ihlr-22948	35	39	in	in	ADP
ihlr-22948	35	40	a	a	DET
ihlr-22948	35	41	systematic	systematic	ADJ
ihlr-22948	35	42	way	way	NOUN
ihlr-22948	35	43	about	about	ADP
ihlr-22948	35	44	patients	patient	NOUN
ihlr-22948	35	45	who	who	PRON
ihlr-22948	35	46	share	share	VERB
ihlr-22948	35	47	a	a	DET
ihlr-22948	35	48	feature	feature	NOUN
ihlr-22948	35	49	of	of	ADP
ihlr-22948	35	50	medical	medical	ADJ
ihlr-22948	35	51	interest	interest	NOUN
ihlr-22948	35	52	.	.	PUNCT
ihlr-22948	36	1	the	the	DET
ihlr-22948	36	2	registry	registry	NOUN
ihlr-22948	36	3	’s	’s	PART
ihlr-22948	36	4	purpose	purpose	NOUN
ihlr-22948	36	5	drives	drive	VERB
ihlr-22948	36	6	choices	choice	NOUN
ihlr-22948	36	7	about	about	ADP
ihlr-22948	36	8	its	its	PRON
ihlr-22948	36	9	participant	participant	ADJ
ihlr-22948	36	10	pool	pool	NOUN
ihlr-22948	36	11	,	,	PUNCT
ihlr-22948	36	12	data	data	NOUN
ihlr-22948	36	13	collection	collection	NOUN
ihlr-22948	36	14	,	,	PUNCT
ihlr-22948	36	15	data	datum	NOUN
ihlr-22948	36	16	standards	standard	NOUN
ihlr-22948	36	17	,	,	PUNCT
ihlr-22948	36	18	funding	funding	NOUN
ihlr-22948	36	19	sources	source	NOUN
ihlr-22948	36	20	,	,	PUNCT
ihlr-22948	36	21	and	and	CCONJ
ihlr-22948	36	22	even	even	ADV
ihlr-22948	36	23	stakeholders	stakeholder	NOUN
ihlr-22948	36	24	involved	involve	VERB
ihlr-22948	36	25	in	in	ADP
ihlr-22948	36	26	making	make	VERB
ihlr-22948	36	27	decisions	decision	NOUN
ihlr-22948	36	28	about	about	ADP
ihlr-22948	36	29	the	the	DET
ihlr-22948	36	30	registry	registry	NOUN
ihlr-22948	36	31	.	.	PUNCT
ihlr-22948	37	1	registry	registry	PROPN
ihlr-22948	37	2	stakeholders	stakeholder	NOUN
ihlr-22948	37	3	play	play	VERB
ihlr-22948	37	4	critical	critical	ADJ
ihlr-22948	37	5	roles	role	NOUN
ihlr-22948	37	6	in	in	ADP
ihlr-22948	37	7	determining	determine	VERB
ihlr-22948	37	8	a	a	DET
ihlr-22948	37	9	registry	registry	NOUN
ihlr-22948	37	10	’s	’s	PART
ihlr-22948	37	11	purposes	purpose	NOUN
ihlr-22948	37	12	and	and	CCONJ
ihlr-22948	37	13	activities	activity	NOUN
ihlr-22948	37	14	.	.	PUNCT
ihlr-22948	38	1	a	a	DET
ihlr-22948	38	2	“	"	PUNCT
ihlr-22948	38	3	stakeholder	stakeholder	NOUN
ihlr-22948	38	4	’s	’s	PART
ihlr-22948	38	5	input	input	NOUN
ihlr-22948	38	6	directly	directly	ADV
ihlr-22948	38	7	influences	influence	VERB
ihlr-22948	38	8	whether	whether	SCONJ
ihlr-22948	38	9	development	development	NOUN
ihlr-22948	38	10	of	of	ADP
ihlr-22948	38	11	a	a	DET
ihlr-22948	38	12	registry	registry	NOUN
ihlr-22948	38	13	can	can	AUX
ihlr-22948	38	14	proceed	proceed	VERB
ihlr-22948	38	15	,	,	PUNCT
ihlr-22948	38	16	and	and	CCONJ
ihlr-22948	38	17	it	it	PRON
ihlr-22948	38	18	can	can	AUX
ihlr-22948	38	19	have	have	VERB
ihlr-22948	38	20	a	a	DET
ihlr-22948	38	21	strong	strong	ADJ
ihlr-22948	38	22	influence	influence	NOUN
ihlr-22948	38	23	on	on	ADP
ihlr-22948	38	24	how	how	SCONJ
ihlr-22948	38	25	a	a	DET
ihlr-22948	38	26	registry	registry	NOUN
ihlr-22948	38	27	is	be	AUX
ihlr-22948	38	28	conducted	conduct	VERB
ihlr-22948	38	29	.	.	PUNCT
ihlr-22948	38	30	”2	”2	PUNCT
ihlr-22948	39	1	stakeholders	stakeholder	NOUN
ihlr-22948	39	2	are	be	AUX
ihlr-22948	39	3	either	either	CCONJ
ihlr-22948	39	4	primary	primary	ADJ
ihlr-22948	39	5	or	or	CCONJ
ihlr-22948	39	6	secondary	secondary	ADJ
ihlr-22948	39	7	.	.	PUNCT
ihlr-22948	40	1	primary	primary	ADJ
ihlr-22948	40	2	stakeholders	stakeholder	NOUN
ihlr-22948	40	3	are	be	AUX
ihlr-22948	40	4	those	those	PRON
ihlr-22948	40	5	responsible	responsible	ADJ
ihlr-22948	40	6	for	for	ADP
ihlr-22948	40	7	the	the	DET
ihlr-22948	40	8	data	data	NOUN
ihlr-22948	40	9	collection	collection	NOUN
ihlr-22948	40	10	and	and	CCONJ
ihlr-22948	40	11	management	management	NOUN
ihlr-22948	40	12	of	of	ADP
ihlr-22948	40	13	the	the	DET
ihlr-22948	40	14	registry	registry	NOUN
ihlr-22948	40	15	.	.	PUNCT
ihlr-22948	41	1	secondary	secondary	ADJ
ihlr-22948	41	2	stakeholders	stakeholder	NOUN
ihlr-22948	41	3	are	be	AUX
ihlr-22948	41	4	distinguished	distinguish	VERB
ihlr-22948	41	5	by	by	ADP
ihlr-22948	41	6	the	the	DET
ihlr-22948	41	7	fact	fact	NOUN
ihlr-22948	41	8	that	that	SCONJ
ihlr-22948	41	9	they	they	PRON
ihlr-22948	41	10	benefit	benefit	VERB
ihlr-22948	41	11	from	from	ADP
ihlr-22948	41	12	the	the	DET
ihlr-22948	41	13	data	datum	NOUN
ihlr-22948	41	14	that	that	PRON
ihlr-22948	41	15	is	be	AUX
ihlr-22948	41	16	collected	collect	VERB
ihlr-22948	41	17	as	as	ADP
ihlr-22948	41	18	part	part	NOUN
ihlr-22948	41	19	of	of	ADP
ihlr-22948	41	20	the	the	DET
ihlr-22948	41	21	registry	registry	NOUN
ihlr-22948	41	22	.	.	PUNCT
ihlr-22948	42	1	these	these	DET
ihlr-22948	42	2	secondary	secondary	ADJ
ihlr-22948	42	3	stakeholders	stakeholder	NOUN
ihlr-22948	42	4	might	might	AUX
ihlr-22948	42	5	include	include	VERB
ihlr-22948	42	6	other	other	ADJ
ihlr-22948	42	7	researchers	researcher	NOUN
ihlr-22948	42	8	,	,	PUNCT
ihlr-22948	42	9	patients	patient	NOUN
ihlr-22948	42	10	,	,	PUNCT
ihlr-22948	42	11	patient	patient	ADJ
ihlr-22948	42	12	organizations	organization	NOUN
ihlr-22948	42	13	,	,	PUNCT
ihlr-22948	42	14	or	or	CCONJ
ihlr-22948	42	15	commercial	commercial	ADJ
ihlr-22948	42	16	entities	entity	NOUN
ihlr-22948	42	17	such	such	ADJ
ihlr-22948	42	18	as	as	ADP
ihlr-22948	42	19	pharmaceutical	pharmaceutical	ADJ
ihlr-22948	42	20	companies	company	NOUN
ihlr-22948	42	21	.	.	PUNCT
ihlr-22948	43	1	in	in	ADP
ihlr-22948	43	2	some	some	DET
ihlr-22948	43	3	instances	instance	NOUN
ihlr-22948	43	4	,	,	PUNCT
ihlr-22948	43	5	a	a	DET
ihlr-22948	43	6	secondary	secondary	ADJ
ihlr-22948	43	7	stakeholder	stakeholder	NOUN
ihlr-22948	43	8	could	could	AUX
ihlr-22948	43	9	have	have	VERB
ihlr-22948	43	10	a	a	DET
ihlr-22948	43	11	greater	great	ADJ
ihlr-22948	43	12	impact	impact	NOUN
ihlr-22948	43	13	on	on	ADP
ihlr-22948	43	14	the	the	DET
ihlr-22948	43	15	purpose	purpose	NOUN
ihlr-22948	43	16	and	and	CCONJ
ihlr-22948	43	17	activities	activity	NOUN
ihlr-22948	43	18	of	of	ADP
ihlr-22948	43	19	a	a	DET
ihlr-22948	43	20	registry	registry	NOUN
ihlr-22948	43	21	than	than	ADP
ihlr-22948	43	22	a	a	DET
ihlr-22948	43	23	primary	primary	ADJ
ihlr-22948	43	24	stakeholder	stakeholder	NOUN
ihlr-22948	43	25	.	.	PUNCT
ihlr-22948	44	1	this	this	DET
ihlr-22948	44	2	situation	situation	NOUN
ihlr-22948	44	3	is	be	AUX
ihlr-22948	44	4	especially	especially	ADV
ihlr-22948	44	5	likely	likely	ADJ
ihlr-22948	44	6	if	if	SCONJ
ihlr-22948	44	7	stakeholders	stakeholder	NOUN
ihlr-22948	44	8	provide	provide	VERB
ihlr-22948	44	9	funding	funding	NOUN
ihlr-22948	44	10	for	for	ADP
ihlr-22948	44	11	the	the	DET
ihlr-22948	44	12	registry	registry	NOUN
ihlr-22948	44	13	.	.	PUNCT
ihlr-22948	45	1	registries	registry	NOUN
ihlr-22948	45	2	have	have	VERB
ihlr-22948	45	3	in	in	ADP
ihlr-22948	45	4	common	common	ADJ
ihlr-22948	45	5	that	that	SCONJ
ihlr-22948	45	6	they	they	PRON
ihlr-22948	45	7	possess	possess	VERB
ihlr-22948	45	8	data	datum	NOUN
ihlr-22948	45	9	,	,	PUNCT
ihlr-22948	45	10	sometimes	sometimes	ADV
ihlr-22948	45	11	the	the	DET
ihlr-22948	45	12	data	data	NOUN
ihlr-22948	45	13	is	be	AUX
ihlr-22948	45	14	very	very	ADV
ihlr-22948	45	15	rich	rich	ADJ
ihlr-22948	45	16	.	.	PUNCT
ihlr-22948	46	1	they	they	PRON
ihlr-22948	46	2	may	may	AUX
ihlr-22948	46	3	collect	collect	VERB
ihlr-22948	46	4	information	information	NOUN
ihlr-22948	46	5	from	from	ADP
ihlr-22948	46	6	across	across	ADP
ihlr-22948	46	7	the	the	DET
ihlr-22948	46	8	globe	globe	NOUN
ihlr-22948	46	9	about	about	ADP
ihlr-22948	46	10	conditions	condition	NOUN
ihlr-22948	46	11	that	that	PRON
ihlr-22948	46	12	are	be	AUX
ihlr-22948	46	13	very	very	ADV
ihlr-22948	46	14	rare	rare	ADJ
ihlr-22948	46	15	or	or	CCONJ
ihlr-22948	46	16	events	event	NOUN
ihlr-22948	46	17	that	that	PRON
ihlr-22948	46	18	are	be	AUX
ihlr-22948	46	19	of	of	ADP
ihlr-22948	46	20	low	low	ADJ
ihlr-22948	46	21	frequency	frequency	NOUN
ihlr-22948	46	22	.	.	PUNCT
ihlr-22948	47	1	their	their	PRON
ihlr-22948	47	2	information	information	NOUN
ihlr-22948	47	3	may	may	AUX
ihlr-22948	47	4	be	be	AUX
ihlr-22948	47	5	standardized	standardize	VERB
ihlr-22948	47	6	and	and	CCONJ
ihlr-22948	47	7	collected	collect	VERB
ihlr-22948	47	8	over	over	ADP
ihlr-22948	47	9	long	long	ADJ
ihlr-22948	47	10	periods	period	NOUN
ihlr-22948	47	11	of	of	ADP
ihlr-22948	47	12	time	time	NOUN
ihlr-22948	47	13	.	.	PUNCT
ihlr-22948	48	1	registries	registry	NOUN
ihlr-22948	48	2	thus	thus	ADV
ihlr-22948	48	3	have	have	VERB
ihlr-22948	48	4	the	the	DET
ihlr-22948	48	5	potential	potential	NOUN
ihlr-22948	48	6	to	to	PART
ihlr-22948	48	7	be	be	AUX
ihlr-22948	48	8	critical	critical	ADJ
ihlr-22948	48	9	sources	source	NOUN
ihlr-22948	48	10	of	of	ADP
ihlr-22948	48	11	information	information	NOUN
ihlr-22948	48	12	for	for	ADP
ihlr-22948	48	13	assessing	assess	VERB
ihlr-22948	48	14	disease	disease	NOUN
ihlr-22948	48	15	risks	risk	NOUN
ihlr-22948	48	16	,	,	PUNCT
ihlr-22948	48	17	following	follow	VERB
ihlr-22948	48	18	the	the	DET
ihlr-22948	48	19	natural	natural	ADJ
ihlr-22948	48	20	history	history	NOUN
ihlr-22948	48	21	of	of	ADP
ihlr-22948	48	22	little	little	ADJ
ihlr-22948	48	23	-	-	PUNCT
ihlr-22948	48	24	known	know	VERB
ihlr-22948	48	25	conditions	condition	NOUN
ihlr-22948	48	26	,	,	PUNCT
ihlr-22948	48	27	comparing	compare	VERB
ihlr-22948	48	28	care	care	NOUN
ihlr-22948	48	29	quality	quality	NOUN
ihlr-22948	48	30	1	1	NUM
ihlr-22948	48	31	.	.	PUNCT
ihlr-22948	48	32	agency	agency	NOUN
ihlr-22948	48	33	for	for	ADP
ihlr-22948	48	34	healthcare	healthcare	PROPN
ihlr-22948	48	35	research	research	PROPN
ihlr-22948	48	36	&	&	CCONJ
ihlr-22948	48	37	quality	quality	NOUN
ihlr-22948	48	38	,	,	PUNCT
ihlr-22948	48	39	patent	patent	NOUN
ihlr-22948	48	40	registries	registry	NOUN
ihlr-22948	48	41	,	,	PUNCT
ihlr-22948	48	42	in	in	ADP
ihlr-22948	48	43	registries	registry	NOUN
ihlr-22948	48	44	for	for	ADP
ihlr-22948	48	45	evaluating	evaluate	VERB
ihlr-22948	48	46	patient	patient	ADJ
ihlr-22948	48	47	outcomes	outcome	NOUN
ihlr-22948	48	48	:	:	PUNCT
ihlr-22948	48	49	a	a	DET
ihlr-22948	48	50	user	user	NOUN
ihlr-22948	48	51	’s	’s	PART
ihlr-22948	48	52	guide	guide	NOUN
ihlr-22948	48	53	(	(	PUNCT
ihlr-22948	48	54	richard	richard	PROPN
ihlr-22948	48	55	e.	e.	PROPN
ihlr-22948	48	56	gliklich	gliklich	PROPN
ihlr-22948	48	57	et	et	PROPN
ihlr-22948	48	58	al	al	PROPN
ihlr-22948	48	59	.	.	PUNCT
ihlr-22948	48	60	eds	eds	PROPN
ihlr-22948	48	61	.	.	PROPN
ihlr-22948	48	62	,	,	PUNCT
ihlr-22948	48	63	3rd	3rd	ADJ
ihlr-22948	48	64	ed	ed	NOUN
ihlr-22948	48	65	.	.	PROPN
ihlr-22948	48	66	2014	2014	NUM
ihlr-22948	48	67	)	)	PUNCT
ihlr-22948	48	68	,	,	PUNCT
ihlr-22948	48	69	https://www.ncbi.nlm.nih.gov/books/nbk208643/	https://www.ncbi.nlm.nih.gov/books/nbk208643/	NOUN
ihlr-22948	48	70	[	[	PUNCT
ihlr-22948	48	71	https://perma.cc/93yq-a24y	https://perma.cc/93yq-a24y	X
ihlr-22948	48	72	]	]	PUNCT
ihlr-22948	48	73	.	.	PUNCT
ihlr-22948	49	1	2	2	X
ihlr-22948	49	2	.	.	X
ihlr-22948	49	3	agency	agency	NOUN
ihlr-22948	49	4	for	for	ADP
ihlr-22948	49	5	healthcare	healthcare	PROPN
ihlr-22948	49	6	research	research	PROPN
ihlr-22948	49	7	&	&	CCONJ
ihlr-22948	49	8	quality	quality	NOUN
ihlr-22948	49	9	,	,	PUNCT
ihlr-22948	49	10	planning	plan	VERB
ihlr-22948	49	11	a	a	DET
ihlr-22948	49	12	registry	registry	NOUN
ihlr-22948	49	13	,	,	PUNCT
ihlr-22948	49	14	in	in	ADP
ihlr-22948	49	15	registries	registry	NOUN
ihlr-22948	49	16	for	for	ADP
ihlr-22948	49	17	evaluating	evaluate	VERB
ihlr-22948	49	18	patient	patient	ADJ
ihlr-22948	49	19	outcomes	outcome	NOUN
ihlr-22948	49	20	:	:	PUNCT
ihlr-22948	49	21	a	a	DET
ihlr-22948	49	22	user	user	NOUN
ihlr-22948	49	23	’s	’s	PART
ihlr-22948	49	24	guide	guide	NOUN
ihlr-22948	49	25	(	(	PUNCT
ihlr-22948	49	26	richard	richard	PROPN
ihlr-22948	49	27	e.	e.	PROPN
ihlr-22948	49	28	gliklich	gliklich	PROPN
ihlr-22948	49	29	et	et	PROPN
ihlr-22948	49	30	al	al	PROPN
ihlr-22948	49	31	.	.	PUNCT
ihlr-22948	50	1	eds	eds	PROPN
ihlr-22948	50	2	.	.	PROPN
ihlr-22948	50	3	,	,	PUNCT
ihlr-22948	50	4	3rd	3rd	ADJ
ihlr-22948	50	5	ed	ed	NOUN
ihlr-22948	50	6	.	.	PROPN
ihlr-22948	50	7	2014	2014	NUM
ihlr-22948	50	8	)	)	PUNCT
ihlr-22948	50	9	,	,	PUNCT
ihlr-22948	50	10	https://www.ncbi.nlm.nih.gov/books/nbk208631/#ch2.s19	https://www.ncbi.nlm.nih.gov/books/nbk208631/#ch2.s19	PUNCT
ihlr-22948	51	1	[	[	X
ihlr-22948	51	2	https://perma.cc/w5djfzwq	https://perma.cc/w5djfzwq	NOUN
ihlr-22948	51	3	]	]	PUNCT
ihlr-22948	51	4	.	.	PUNCT
ihlr-22948	52	1	2018	2018	NUM
ihlr-22948	52	2	]	]	PUNCT
ihlr-22948	52	3	patient	patient	ADJ
ihlr-22948	52	4	registries	registry	NOUN
ihlr-22948	52	5	and	and	CCONJ
ihlr-22948	52	6	their	their	PRON
ihlr-22948	52	7	governance	governance	NOUN
ihlr-22948	52	8	45	45	NUM
ihlr-22948	52	9	at	at	ADP
ihlr-22948	52	10	different	different	ADJ
ihlr-22948	52	11	institutions	institution	NOUN
ihlr-22948	52	12	,	,	PUNCT
ihlr-22948	52	13	developing	develop	VERB
ihlr-22948	52	14	novel	novel	ADJ
ihlr-22948	52	15	treatments	treatment	NOUN
ihlr-22948	52	16	,	,	PUNCT
ihlr-22948	52	17	or	or	CCONJ
ihlr-22948	52	18	even	even	ADV
ihlr-22948	52	19	hoped	hope	VERB
ihlr-22948	52	20	-	-	PUNCT
ihlr-22948	52	21	for	for	ADP
ihlr-22948	52	22	cures	cure	NOUN
ihlr-22948	52	23	.	.	PUNCT
ihlr-22948	53	1	if	if	SCONJ
ihlr-22948	53	2	commercial	commercial	ADJ
ihlr-22948	53	3	enterprises	enterprise	NOUN
ihlr-22948	53	4	in	in	ADP
ihlr-22948	53	5	health	health	NOUN
ihlr-22948	53	6	care	care	NOUN
ihlr-22948	53	7	assert	assert	VERB
ihlr-22948	53	8	trade	trade	NOUN
ihlr-22948	53	9	secrets	secret	NOUN
ihlr-22948	53	10	protection	protection	NOUN
ihlr-22948	53	11	over	over	ADP
ihlr-22948	53	12	predictive	predictive	ADJ
ihlr-22948	53	13	algorithms	algorithm	NOUN
ihlr-22948	53	14	they	they	PRON
ihlr-22948	53	15	have	have	AUX
ihlr-22948	53	16	developed	develop	VERB
ihlr-22948	53	17	from	from	ADP
ihlr-22948	53	18	patient	patient	ADJ
ihlr-22948	53	19	data	datum	NOUN
ihlr-22948	53	20	,	,	PUNCT
ihlr-22948	53	21	information	information	NOUN
ihlr-22948	53	22	they	they	PRON
ihlr-22948	53	23	have	have	VERB
ihlr-22948	53	24	about	about	ADP
ihlr-22948	53	25	the	the	DET
ihlr-22948	53	26	significance	significance	NOUN
ihlr-22948	53	27	of	of	ADP
ihlr-22948	53	28	novel	novel	ADJ
ihlr-22948	53	29	genetic	genetic	ADJ
ihlr-22948	53	30	variants	variant	NOUN
ihlr-22948	53	31	,	,	PUNCT
ihlr-22948	53	32	or	or	CCONJ
ihlr-22948	53	33	other	other	ADJ
ihlr-22948	53	34	analytic	analytic	ADJ
ihlr-22948	53	35	methods	method	NOUN
ihlr-22948	53	36	developed	develop	VERB
ihlr-22948	53	37	from	from	ADP
ihlr-22948	53	38	patient	patient	ADJ
ihlr-22948	53	39	information	information	NOUN
ihlr-22948	53	40	,	,	PUNCT
ihlr-22948	53	41	registries	registry	NOUN
ihlr-22948	53	42	may	may	AUX
ihlr-22948	53	43	also	also	ADV
ihlr-22948	53	44	be	be	AUX
ihlr-22948	53	45	an	an	DET
ihlr-22948	53	46	independent	independent	ADJ
ihlr-22948	53	47	source	source	NOUN
ihlr-22948	53	48	of	of	ADP
ihlr-22948	53	49	information	information	NOUN
ihlr-22948	53	50	for	for	ADP
ihlr-22948	53	51	medical	medical	ADJ
ihlr-22948	53	52	research	research	NOUN
ihlr-22948	53	53	or	or	CCONJ
ihlr-22948	53	54	studies	study	NOUN
ihlr-22948	53	55	of	of	ADP
ihlr-22948	53	56	care	care	NOUN
ihlr-22948	53	57	quality	quality	NOUN
ihlr-22948	53	58	.	.	PUNCT
ihlr-22948	54	1	nonetheless	nonetheless	ADV
ihlr-22948	54	2	,	,	PUNCT
ihlr-22948	54	3	ongoing	ongoing	ADJ
ihlr-22948	54	4	upkeep	upkeep	NOUN
ihlr-22948	54	5	of	of	ADP
ihlr-22948	54	6	registries	registry	NOUN
ihlr-22948	54	7	poses	pose	VERB
ihlr-22948	54	8	considerable	considerable	ADJ
ihlr-22948	54	9	administrative	administrative	ADJ
ihlr-22948	54	10	and	and	CCONJ
ihlr-22948	54	11	financial	financial	ADJ
ihlr-22948	54	12	challenges	challenge	NOUN
ihlr-22948	54	13	.	.	PUNCT
ihlr-22948	55	1	b.	b.	VERB
ihlr-22948	55	2	the	the	DET
ihlr-22948	55	3	differing	differ	VERB
ihlr-22948	55	4	characteristics	characteristic	NOUN
ihlr-22948	55	5	of	of	ADP
ihlr-22948	55	6	registries	registry	NOUN
ihlr-22948	55	7	this	this	DET
ihlr-22948	55	8	section	section	NOUN
ihlr-22948	55	9	describes	describe	VERB
ihlr-22948	55	10	the	the	DET
ihlr-22948	55	11	wide	wide	ADJ
ihlr-22948	55	12	variety	variety	NOUN
ihlr-22948	55	13	of	of	ADP
ihlr-22948	55	14	registry	registry	NOUN
ihlr-22948	55	15	purposes	purpose	NOUN
ihlr-22948	55	16	,	,	PUNCT
ihlr-22948	55	17	of	of	ADP
ihlr-22948	55	18	entities	entity	NOUN
ihlr-22948	55	19	that	that	PRON
ihlr-22948	55	20	maintain	maintain	VERB
ihlr-22948	55	21	registries	registry	NOUN
ihlr-22948	55	22	,	,	PUNCT
ihlr-22948	55	23	of	of	ADP
ihlr-22948	55	24	information	information	NOUN
ihlr-22948	55	25	acquisition	acquisition	NOUN
ihlr-22948	55	26	by	by	ADP
ihlr-22948	55	27	registries	registry	NOUN
ihlr-22948	55	28	,	,	PUNCT
ihlr-22948	55	29	and	and	CCONJ
ihlr-22948	55	30	of	of	ADP
ihlr-22948	55	31	registry	registry	NOUN
ihlr-22948	55	32	funding	funding	PROPN
ihlr-22948	55	33	.	.	PUNCT
ihlr-22948	56	1	the	the	DET
ihlr-22948	56	2	size	size	NOUN
ihlr-22948	56	3	and	and	CCONJ
ihlr-22948	56	4	scope	scope	NOUN
ihlr-22948	56	5	of	of	ADP
ihlr-22948	56	6	registries	registry	NOUN
ihlr-22948	56	7	varies	vary	VERB
ihlr-22948	56	8	enormously	enormously	ADV
ihlr-22948	56	9	,	,	PUNCT
ihlr-22948	56	10	from	from	ADP
ihlr-22948	56	11	lists	list	NOUN
ihlr-22948	56	12	of	of	ADP
ihlr-22948	56	13	several	several	ADJ
ihlr-22948	56	14	hundred	hundred	NUM
ihlr-22948	56	15	patients	patient	NOUN
ihlr-22948	56	16	with	with	ADP
ihlr-22948	56	17	rare	rare	ADJ
ihlr-22948	56	18	genetic	genetic	ADJ
ihlr-22948	56	19	syndromes	syndrome	NOUN
ihlr-22948	56	20	to	to	ADP
ihlr-22948	56	21	information	information	NOUN
ihlr-22948	56	22	about	about	ADP
ihlr-22948	56	23	nearly	nearly	ADV
ihlr-22948	56	24	a	a	DET
ihlr-22948	56	25	million	million	NUM
ihlr-22948	56	26	and	and	CCONJ
ihlr-22948	56	27	a	a	DET
ihlr-22948	56	28	half	half	NOUN
ihlr-22948	56	29	patients	patient	NOUN
ihlr-22948	56	30	with	with	ADP
ihlr-22948	56	31	hip	hip	NOUN
ihlr-22948	56	32	or	or	CCONJ
ihlr-22948	56	33	knee	knee	NOUN
ihlr-22948	56	34	replacements	replacement	NOUN
ihlr-22948	56	35	.	.	PUNCT
ihlr-22948	57	1	registries	registry	NOUN
ihlr-22948	57	2	are	be	AUX
ihlr-22948	57	3	proliferating	proliferate	VERB
ihlr-22948	57	4	and	and	CCONJ
ihlr-22948	57	5	taking	take	VERB
ihlr-22948	57	6	many	many	ADJ
ihlr-22948	57	7	different	different	ADJ
ihlr-22948	57	8	forms	form	NOUN
ihlr-22948	57	9	.	.	PUNCT
ihlr-22948	58	1	registries	registry	NOUN
ihlr-22948	58	2	that	that	PRON
ihlr-22948	58	3	are	be	AUX
ihlr-22948	58	4	expensive	expensive	ADJ
ihlr-22948	58	5	to	to	PART
ihlr-22948	58	6	maintain	maintain	VERB
ihlr-22948	58	7	also	also	ADV
ihlr-22948	58	8	may	may	AUX
ihlr-22948	58	9	diminish	diminish	VERB
ihlr-22948	58	10	their	their	PRON
ihlr-22948	58	11	activity	activity	NOUN
ihlr-22948	58	12	levels	level	NOUN
ihlr-22948	58	13	or	or	CCONJ
ihlr-22948	58	14	become	become	VERB
ihlr-22948	58	15	effectively	effectively	ADV
ihlr-22948	58	16	defunct	defunct	ADJ
ihlr-22948	58	17	,	,	PUNCT
ihlr-22948	58	18	leaving	leave	VERB
ihlr-22948	58	19	questions	question	NOUN
ihlr-22948	58	20	about	about	ADP
ihlr-22948	58	21	what	what	PRON
ihlr-22948	58	22	is	be	AUX
ihlr-22948	58	23	to	to	PART
ihlr-22948	58	24	happen	happen	VERB
ihlr-22948	58	25	with	with	ADP
ihlr-22948	58	26	the	the	DET
ihlr-22948	58	27	data	datum	NOUN
ihlr-22948	58	28	they	they	PRON
ihlr-22948	58	29	leave	leave	VERB
ihlr-22948	58	30	behind	behind	ADV
ihlr-22948	58	31	.	.	PUNCT
ihlr-22948	59	1	the	the	DET
ihlr-22948	59	2	vast	vast	ADJ
ihlr-22948	59	3	proliferation	proliferation	NOUN
ihlr-22948	59	4	of	of	ADP
ihlr-22948	59	5	registries	registry	NOUN
ihlr-22948	59	6	gives	give	VERB
ihlr-22948	59	7	rise	rise	NOUN
ihlr-22948	59	8	to	to	ADP
ihlr-22948	59	9	concerns	concern	NOUN
ihlr-22948	59	10	about	about	ADP
ihlr-22948	59	11	reduplication	reduplication	NOUN
ihlr-22948	59	12	,	,	PUNCT
ihlr-22948	59	13	wasted	waste	VERB
ihlr-22948	59	14	efforts	effort	NOUN
ihlr-22948	59	15	,	,	PUNCT
ihlr-22948	59	16	gaps	gap	NOUN
ihlr-22948	59	17	,	,	PUNCT
ihlr-22948	59	18	and	and	CCONJ
ihlr-22948	59	19	missed	miss	VERB
ihlr-22948	59	20	opportunities	opportunity	NOUN
ihlr-22948	59	21	for	for	ADP
ihlr-22948	59	22	cooperation	cooperation	NOUN
ihlr-22948	59	23	.	.	PUNCT
ihlr-22948	60	1	efforts	effort	NOUN
ihlr-22948	60	2	have	have	AUX
ihlr-22948	60	3	been	be	AUX
ihlr-22948	60	4	made	make	VERB
ihlr-22948	60	5	to	to	PART
ihlr-22948	60	6	gather	gather	VERB
ihlr-22948	60	7	information	information	NOUN
ihlr-22948	60	8	about	about	ADP
ihlr-22948	60	9	what	what	PRON
ihlr-22948	60	10	registries	registry	NOUN
ihlr-22948	60	11	are	be	AUX
ihlr-22948	60	12	in	in	ADP
ihlr-22948	60	13	operation	operation	NOUN
ihlr-22948	60	14	but	but	CCONJ
ihlr-22948	60	15	by	by	ADP
ihlr-22948	60	16	no	no	DET
ihlr-22948	60	17	means	mean	NOUN
ihlr-22948	60	18	are	be	AUX
ihlr-22948	60	19	complete	complete	ADJ
ihlr-22948	60	20	.	.	PUNCT
ihlr-22948	61	1	the	the	DET
ihlr-22948	61	2	national	national	PROPN
ihlr-22948	61	3	institutes	institutes	PROPN
ihlr-22948	61	4	of	of	ADP
ihlr-22948	61	5	health	health	PROPN
ihlr-22948	61	6	maintains	maintain	VERB
ihlr-22948	61	7	a	a	DET
ihlr-22948	61	8	list	list	NOUN
ihlr-22948	61	9	of	of	ADP
ihlr-22948	61	10	registries	registry	NOUN
ihlr-22948	61	11	functioning	function	VERB
ihlr-22948	61	12	at	at	ADP
ihlr-22948	61	13	the	the	DET
ihlr-22948	61	14	national	national	ADJ
ihlr-22948	61	15	level	level	NOUN
ihlr-22948	61	16	that	that	PRON
ihlr-22948	61	17	is	be	AUX
ihlr-22948	61	18	explicitly	explicitly	ADV
ihlr-22948	61	19	not	not	PART
ihlr-22948	61	20	intended	intend	VERB
ihlr-22948	61	21	to	to	PART
ihlr-22948	61	22	be	be	AUX
ihlr-22948	61	23	comprehensive.3	comprehensive.3	PROPN
ihlr-22948	61	24	ahrq	ahrq	NOUN
ihlr-22948	61	25	maintains	maintain	VERB
ihlr-22948	61	26	a	a	DET
ihlr-22948	61	27	registry	registry	NOUN
ihlr-22948	61	28	of	of	ADP
ihlr-22948	61	29	patient	patient	ADJ
ihlr-22948	61	30	registries	registry	NOUN
ihlr-22948	61	31	that	that	PRON
ihlr-22948	61	32	allows	allow	VERB
ihlr-22948	61	33	registry	registry	NOUN
ihlr-22948	61	34	owners	owner	NOUN
ihlr-22948	61	35	to	to	PART
ihlr-22948	61	36	provide	provide	VERB
ihlr-22948	61	37	information	information	NOUN
ihlr-22948	61	38	about	about	ADP
ihlr-22948	61	39	their	their	PRON
ihlr-22948	61	40	registries	registry	NOUN
ihlr-22948	61	41	,	,	PUNCT
ihlr-22948	61	42	including	include	VERB
ihlr-22948	61	43	registry	registry	NOUN
ihlr-22948	61	44	collaborators	collaborator	NOUN
ihlr-22948	61	45	and	and	CCONJ
ihlr-22948	61	46	the	the	DET
ihlr-22948	61	47	status	status	NOUN
ihlr-22948	61	48	of	of	ADP
ihlr-22948	61	49	any	any	DET
ihlr-22948	61	50	clinical	clinical	ADJ
ihlr-22948	61	51	trials	trial	NOUN
ihlr-22948	61	52	being	be	AUX
ihlr-22948	61	53	conducted.4	conducted.4	ADV
ihlr-22948	61	54	other	other	ADJ
ihlr-22948	61	55	entities	entity	NOUN
ihlr-22948	61	56	such	such	ADJ
ihlr-22948	61	57	as	as	ADP
ihlr-22948	61	58	the	the	DET
ihlr-22948	61	59	national	national	PROPN
ihlr-22948	61	60	association	association	PROPN
ihlr-22948	61	61	of	of	ADP
ihlr-22948	61	62	rare	rare	ADJ
ihlr-22948	61	63	diseases	disease	NOUN
ihlr-22948	61	64	(	(	PUNCT
ihlr-22948	61	65	“	"	PUNCT
ihlr-22948	61	66	nord	nord	NOUN
ihlr-22948	61	67	”	"	PUNCT
ihlr-22948	61	68	)	)	PUNCT
ihlr-22948	61	69	or	or	CCONJ
ihlr-22948	61	70	sanford	sanford	PROPN
ihlr-22948	61	71	research	research	PROPN
ihlr-22948	61	72	also	also	ADV
ihlr-22948	61	73	maintain	maintain	VERB
ihlr-22948	61	74	a	a	DET
ihlr-22948	61	75	significant	significant	ADJ
ihlr-22948	61	76	number	number	NOUN
ihlr-22948	61	77	of	of	ADP
ihlr-22948	61	78	registries	registry	NOUN
ihlr-22948	61	79	and	and	CCONJ
ihlr-22948	61	80	provide	provide	VERB
ihlr-22948	61	81	resources	resource	NOUN
ihlr-22948	61	82	for	for	ADP
ihlr-22948	61	83	small	small	ADJ
ihlr-22948	61	84	patient	patient	ADJ
ihlr-22948	61	85	groups	group	NOUN
ihlr-22948	61	86	that	that	PRON
ihlr-22948	61	87	may	may	AUX
ihlr-22948	61	88	be	be	AUX
ihlr-22948	61	89	unable	unable	ADJ
ihlr-22948	61	90	to	to	PART
ihlr-22948	61	91	develop	develop	VERB
ihlr-22948	61	92	registries	registry	NOUN
ihlr-22948	61	93	on	on	ADP
ihlr-22948	61	94	their	their	PRON
ihlr-22948	61	95	own	own	ADJ
ihlr-22948	61	96	.	.	PUNCT
ihlr-22948	62	1	the	the	DET
ihlr-22948	62	2	description	description	NOUN
ihlr-22948	62	3	that	that	PRON
ihlr-22948	62	4	follows	follow	VERB
ihlr-22948	62	5	draws	draw	VERB
ihlr-22948	62	6	on	on	ADP
ihlr-22948	62	7	these	these	DET
ihlr-22948	62	8	and	and	CCONJ
ihlr-22948	62	9	other	other	ADJ
ihlr-22948	62	10	sources	source	NOUN
ihlr-22948	62	11	but	but	CCONJ
ihlr-22948	62	12	it	it	PRON
ihlr-22948	62	13	is	be	AUX
ihlr-22948	62	14	important	important	ADJ
ihlr-22948	62	15	to	to	PART
ihlr-22948	62	16	recognize	recognize	VERB
ihlr-22948	62	17	that	that	SCONJ
ihlr-22948	62	18	efforts	effort	NOUN
ihlr-22948	62	19	to	to	PART
ihlr-22948	62	20	provide	provide	VERB
ihlr-22948	62	21	a	a	DET
ihlr-22948	62	22	systematic	systematic	ADJ
ihlr-22948	62	23	description	description	NOUN
ihlr-22948	62	24	of	of	ADP
ihlr-22948	62	25	a	a	DET
ihlr-22948	62	26	widespread	widespread	ADJ
ihlr-22948	62	27	and	and	CCONJ
ihlr-22948	62	28	changing	change	VERB
ihlr-22948	62	29	phenomenon	phenomenon	NOUN
ihlr-22948	62	30	will	will	AUX
ihlr-22948	62	31	inevitably	inevitably	ADV
ihlr-22948	62	32	be	be	AUX
ihlr-22948	62	33	incomplete	incomplete	ADJ
ihlr-22948	62	34	.	.	PUNCT
ihlr-22948	63	1	although	although	SCONJ
ihlr-22948	63	2	some	some	DET
ihlr-22948	63	3	registries	registry	NOUN
ihlr-22948	63	4	of	of	ADP
ihlr-22948	63	5	registries	registry	NOUN
ihlr-22948	63	6	or	or	CCONJ
ihlr-22948	63	7	registry	registry	NOUN
ihlr-22948	63	8	consortiums	consortium	NOUN
ihlr-22948	63	9	also	also	ADV
ihlr-22948	63	10	exist	exist	VERB
ihlr-22948	63	11	—	—	PUNCT
ihlr-22948	63	12	that	that	PRON
ihlr-22948	63	13	collect	collect	VERB
ihlr-22948	63	14	information	information	NOUN
ihlr-22948	63	15	about	about	ADP
ihlr-22948	63	16	registries5	registries5	NOUN
ihlr-22948	63	17	or	or	CCONJ
ihlr-22948	63	18	that	that	PRON
ihlr-22948	63	19	seek	seek	VERB
ihlr-22948	63	20	to	to	PART
ihlr-22948	63	21	further	further	VERB
ihlr-22948	63	22	collaboration	collaboration	NOUN
ihlr-22948	63	23	among	among	ADP
ihlr-22948	63	24	registries6	registries6	PROPN
ihlr-22948	63	25	—	—	PUNCT
ihlr-22948	63	26	the	the	DET
ihlr-22948	63	27	focus	focus	NOUN
ihlr-22948	63	28	of	of	ADP
ihlr-22948	63	29	3	3	NUM
ihlr-22948	63	30	.	.	NOUN
ihlr-22948	63	31	list	list	NOUN
ihlr-22948	63	32	of	of	ADP
ihlr-22948	63	33	registries	registry	NOUN
ihlr-22948	63	34	,	,	PUNCT
ihlr-22948	63	35	nat’l	nat’l	NOUN
ihlr-22948	63	36	inst	inst	NOUN
ihlr-22948	63	37	.	.	PUNCT
ihlr-22948	64	1	health	health	NOUN
ihlr-22948	64	2	,	,	PUNCT
ihlr-22948	64	3	https://www.nih.gov/health-information/nihclinical-research-trials-you/list-registries	https://www.nih.gov/health-information/nihclinical-research-trials-you/list-registrie	NOUN
ihlr-22948	64	4	[	[	X
ihlr-22948	64	5	https://perma.cc/525g-ytd6	https://perma.cc/525g-ytd6	X
ihlr-22948	64	6	]	]	X
ihlr-22948	64	7	(	(	PUNCT
ihlr-22948	64	8	last	last	ADV
ihlr-22948	64	9	reviewed	review	VERB
ihlr-22948	64	10	aug	aug	PROPN
ihlr-22948	64	11	.	.	PROPN
ihlr-22948	64	12	8	8	NUM
ihlr-22948	64	13	,	,	PUNCT
ihlr-22948	64	14	2018	2018	NUM
ihlr-22948	64	15	)	)	PUNCT
ihlr-22948	64	16	.	.	PUNCT
ihlr-22948	65	1	4	4	X
ihlr-22948	65	2	.	.	X
ihlr-22948	65	3	about	about	ADP
ihlr-22948	65	4	the	the	DET
ihlr-22948	65	5	registry	registry	NOUN
ihlr-22948	65	6	of	of	ADP
ihlr-22948	65	7	patient	patient	ADJ
ihlr-22948	65	8	registries	registry	NOUN
ihlr-22948	65	9	(	(	PUNCT
ihlr-22948	65	10	ropr	ropr	NOUN
ihlr-22948	65	11	)	)	PUNCT
ihlr-22948	65	12	,	,	PUNCT
ihlr-22948	65	13	agency	agency	NOUN
ihlr-22948	65	14	for	for	ADP
ihlr-22948	65	15	healthcare	healthcare	NOUN
ihlr-22948	65	16	res	re	NOUN
ihlr-22948	65	17	.	.	PROPN
ihlr-22948	65	18	&	&	CCONJ
ihlr-22948	65	19	quality	quality	PROPN
ihlr-22948	65	20	,	,	PUNCT
ihlr-22948	65	21	https://patientregistry.ahrq.gov/about/	https://patientregistry.ahrq.gov/about/	VERB
ihlr-22948	65	22	[	[	X
ihlr-22948	65	23	https://perma.cc/5u3d-uudl	https://perma.cc/5u3d-uudl	PROPN
ihlr-22948	65	24	]	]	X
ihlr-22948	65	25	.	.	PUNCT
ihlr-22948	66	1	5	5	X
ihlr-22948	66	2	.	.	X
ihlr-22948	66	3	see	see	VERB
ihlr-22948	66	4	listing	listing	NOUN
ihlr-22948	66	5	of	of	ADP
ihlr-22948	66	6	clinical	clinical	ADJ
ihlr-22948	66	7	trial	trial	NOUN
ihlr-22948	66	8	registries	registry	NOUN
ihlr-22948	66	9	,	,	PUNCT
ihlr-22948	66	10	u.s	u.s	PROPN
ihlr-22948	66	11	.	.	PROPN
ihlr-22948	66	12	dep’t	dep’t	PROPN
ihlr-22948	66	13	of	of	ADP
ihlr-22948	66	14	health	health	PROPN
ihlr-22948	66	15	&	&	CCONJ
ihlr-22948	66	16	human	human	PROPN
ihlr-22948	66	17	servs	servs	PROPN
ihlr-22948	66	18	.	.	PUNCT
ihlr-22948	67	1	(	(	PUNCT
ihlr-22948	67	2	may	may	AUX
ihlr-22948	67	3	28	28	NUM
ihlr-22948	67	4	,	,	PUNCT
ihlr-22948	67	5	2015	2015	NUM
ihlr-22948	67	6	)	)	PUNCT
ihlr-22948	67	7	,	,	PUNCT
ihlr-22948	67	8	https://www.hhs.gov/ohrp/international/clinical-trial-registries/index.html#_edn2	https://www.hhs.gov/ohrp/international/clinical-trial-registries/index.html#_edn2	PUNCT
ihlr-22948	68	1	[	[	X
ihlr-22948	68	2	https://perma.cc/p6an-pk3p	https://perma.cc/p6an-pk3p	X
ihlr-22948	68	3	]	]	X
ihlr-22948	68	4	;	;	PUNCT
ihlr-22948	68	5	wendy	wendy	PROPN
ihlr-22948	68	6	s.	s.	PROPN
ihlr-22948	68	7	rubinstein	rubinstein	PROPN
ihlr-22948	68	8	et	et	PROPN
ihlr-22948	68	9	al	al	PROPN
ihlr-22948	68	10	.	.	PROPN
ihlr-22948	68	11	,	,	PUNCT
ihlr-22948	68	12	the	the	DET
ihlr-22948	68	13	nih	nih	PROPN
ihlr-22948	68	14	genetic	genetic	PROPN
ihlr-22948	68	15	testing	testing	PROPN
ihlr-22948	68	16	registry	registry	NOUN
ihlr-22948	68	17	:	:	PUNCT
ihlr-22948	68	18	a	a	DET
ihlr-22948	68	19	new	new	ADJ
ihlr-22948	68	20	,	,	PUNCT
ihlr-22948	68	21	centralized	centralized	ADJ
ihlr-22948	68	22	database	database	NOUN
ihlr-22948	68	23	of	of	ADP
ihlr-22948	68	24	genetic	genetic	ADJ
ihlr-22948	68	25	tests	test	NOUN
ihlr-22948	68	26	to	to	PART
ihlr-22948	68	27	enable	enable	VERB
ihlr-22948	68	28	access	access	NOUN
ihlr-22948	68	29	to	to	ADP
ihlr-22948	68	30	comprehensive	comprehensive	ADJ
ihlr-22948	68	31	information	information	NOUN
ihlr-22948	68	32	and	and	CCONJ
ihlr-22948	68	33	improve	improve	VERB
ihlr-22948	68	34	transparency	transparency	NOUN
ihlr-22948	68	35	,	,	PUNCT
ihlr-22948	68	36	41	41	NUM
ihlr-22948	68	37	nucleic	nucleic	ADJ
ihlr-22948	68	38	acids	acid	NOUN
ihlr-22948	68	39	res	re	NOUN
ihlr-22948	68	40	.	.	PUNCT
ihlr-22948	69	1	d925	d925	PROPN
ihlr-22948	69	2	(	(	PUNCT
ihlr-22948	69	3	2013	2013	NUM
ihlr-22948	69	4	)	)	PUNCT
ihlr-22948	69	5	,	,	PUNCT
ihlr-22948	69	6	https://doi.org/10.1093/nar/gks1173	https://doi.org/10.1093/nar/gks1173	PROPN
ihlr-22948	69	7	46	46	NUM
ihlr-22948	69	8	indiana	indiana	PROPN
ihlr-22948	69	9	health	health	PROPN
ihlr-22948	69	10	law	law	PROPN
ihlr-22948	69	11	review	review	NOUN
ihlr-22948	70	1	[	[	X
ihlr-22948	70	2	vol	vol	NOUN
ihlr-22948	70	3	.	.	PUNCT
ihlr-22948	71	1	16:43	16:43	NUM
ihlr-22948	71	2	what	what	PRON
ihlr-22948	71	3	follows	follow	VERB
ihlr-22948	71	4	will	will	AUX
ihlr-22948	71	5	be	be	AUX
ihlr-22948	71	6	registries	registry	NOUN
ihlr-22948	71	7	collecting	collect	VERB
ihlr-22948	71	8	information	information	NOUN
ihlr-22948	71	9	about	about	ADP
ihlr-22948	71	10	individual	individual	ADJ
ihlr-22948	71	11	patients	patient	NOUN
ihlr-22948	71	12	.	.	PUNCT
ihlr-22948	72	1	1	1	X
ihlr-22948	72	2	.	.	X
ihlr-22948	72	3	registry	registry	NOUN
ihlr-22948	72	4	purposes	purpose	NOUN
ihlr-22948	72	5	the	the	DET
ihlr-22948	72	6	wide	wide	ADJ
ihlr-22948	72	7	variety	variety	NOUN
ihlr-22948	72	8	of	of	ADP
ihlr-22948	72	9	registry	registry	NOUN
ihlr-22948	72	10	purposes	purpose	NOUN
ihlr-22948	72	11	includes	include	VERB
ihlr-22948	72	12	collecting	collect	VERB
ihlr-22948	72	13	contact	contact	NOUN
ihlr-22948	72	14	information	information	NOUN
ihlr-22948	72	15	about	about	ADP
ihlr-22948	72	16	individuals	individual	NOUN
ihlr-22948	72	17	with	with	ADP
ihlr-22948	72	18	particular	particular	ADJ
ihlr-22948	72	19	conditions	condition	NOUN
ihlr-22948	72	20	,	,	PUNCT
ihlr-22948	72	21	assessing	assess	VERB
ihlr-22948	72	22	the	the	DET
ihlr-22948	72	23	incidence	incidence	NOUN
ihlr-22948	72	24	and	and	CCONJ
ihlr-22948	72	25	prevalence	prevalence	NOUN
ihlr-22948	72	26	of	of	ADP
ihlr-22948	72	27	conditions	condition	NOUN
ihlr-22948	72	28	,	,	PUNCT
ihlr-22948	72	29	studying	study	VERB
ihlr-22948	72	30	the	the	DET
ihlr-22948	72	31	natural	natural	ADJ
ihlr-22948	72	32	history	history	NOUN
ihlr-22948	72	33	of	of	ADP
ihlr-22948	72	34	conditions	condition	NOUN
ihlr-22948	72	35	,	,	PUNCT
ihlr-22948	72	36	assessing	assess	VERB
ihlr-22948	72	37	treatment	treatment	NOUN
ihlr-22948	72	38	safety	safety	NOUN
ihlr-22948	72	39	and	and	CCONJ
ihlr-22948	72	40	efficacy	efficacy	NOUN
ihlr-22948	72	41	,	,	PUNCT
ihlr-22948	72	42	comparing	compare	VERB
ihlr-22948	72	43	treatment	treatment	NOUN
ihlr-22948	72	44	outcomes	outcome	NOUN
ihlr-22948	72	45	for	for	ADP
ihlr-22948	72	46	patients	patient	NOUN
ihlr-22948	72	47	,	,	PUNCT
ihlr-22948	72	48	engaging	engage	VERB
ihlr-22948	72	49	in	in	ADP
ihlr-22948	72	50	clinical	clinical	ADJ
ihlr-22948	72	51	research	research	NOUN
ihlr-22948	72	52	,	,	PUNCT
ihlr-22948	72	53	and	and	CCONJ
ihlr-22948	72	54	providing	provide	VERB
ihlr-22948	72	55	support	support	NOUN
ihlr-22948	72	56	for	for	ADP
ihlr-22948	72	57	patients	patient	NOUN
ihlr-22948	72	58	and	and	CCONJ
ihlr-22948	72	59	their	their	PRON
ihlr-22948	72	60	families	family	NOUN
ihlr-22948	72	61	.	.	PUNCT
ihlr-22948	73	1	individual	individual	ADJ
ihlr-22948	73	2	registries	registry	NOUN
ihlr-22948	73	3	may	may	AUX
ihlr-22948	73	4	,	,	PUNCT
ihlr-22948	73	5	of	of	ADP
ihlr-22948	73	6	course	course	NOUN
ihlr-22948	73	7	,	,	PUNCT
ihlr-22948	73	8	serve	serve	VERB
ihlr-22948	73	9	many	many	ADJ
ihlr-22948	73	10	of	of	ADP
ihlr-22948	73	11	these	these	DET
ihlr-22948	73	12	different	different	ADJ
ihlr-22948	73	13	functions	function	NOUN
ihlr-22948	73	14	.	.	PUNCT
ihlr-22948	74	1	estimates	estimate	NOUN
ihlr-22948	74	2	are	be	AUX
ihlr-22948	74	3	that	that	SCONJ
ihlr-22948	74	4	over	over	ADP
ihlr-22948	74	5	7,000	7,000	NUM
ihlr-22948	74	6	rare	rare	ADJ
ihlr-22948	74	7	diseases	disease	NOUN
ihlr-22948	74	8	have	have	AUX
ihlr-22948	74	9	been	be	AUX
ihlr-22948	74	10	identified	identify	VERB
ihlr-22948	74	11	,	,	PUNCT
ihlr-22948	74	12	many	many	ADJ
ihlr-22948	74	13	of	of	ADP
ihlr-22948	74	14	which	which	PRON
ihlr-22948	74	15	are	be	AUX
ihlr-22948	74	16	genetic	genetic	ADJ
ihlr-22948	74	17	in	in	ADP
ihlr-22948	74	18	origin	origin	NOUN
ihlr-22948	74	19	and	and	CCONJ
ihlr-22948	74	20	manifested	manifest	VERB
ihlr-22948	74	21	in	in	ADP
ihlr-22948	74	22	childhood	childhood	NOUN
ihlr-22948	74	23	.	.	PUNCT
ihlr-22948	75	1	while	while	SCONJ
ihlr-22948	75	2	a	a	DET
ihlr-22948	75	3	disease	disease	NOUN
ihlr-22948	75	4	is	be	AUX
ihlr-22948	75	5	classified	classify	VERB
ihlr-22948	75	6	as	as	ADP
ihlr-22948	75	7	“	"	PUNCT
ihlr-22948	75	8	rare	rare	ADJ
ihlr-22948	75	9	”	"	PUNCT
ihlr-22948	75	10	in	in	ADP
ihlr-22948	75	11	the	the	DET
ihlr-22948	75	12	u.s	u.s	PROPN
ihlr-22948	75	13	.	.	PROPN
ihlr-22948	75	14	if	if	SCONJ
ihlr-22948	75	15	it	it	PRON
ihlr-22948	75	16	affects	affect	VERB
ihlr-22948	75	17	fewer	few	ADJ
ihlr-22948	75	18	than	than	ADP
ihlr-22948	75	19	200,000	200,000	NUM
ihlr-22948	75	20	patients,7	patients,7	NOUN
ihlr-22948	75	21	some	some	DET
ihlr-22948	75	22	very	very	ADV
ihlr-22948	75	23	rare	rare	ADJ
ihlr-22948	75	24	syndromes	syndrome	NOUN
ihlr-22948	75	25	have	have	AUX
ihlr-22948	75	26	been	be	AUX
ihlr-22948	75	27	diagnosed	diagnose	VERB
ihlr-22948	75	28	in	in	ADP
ihlr-22948	75	29	as	as	ADV
ihlr-22948	75	30	few	few	ADJ
ihlr-22948	75	31	as	as	ADP
ihlr-22948	75	32	a	a	DET
ihlr-22948	75	33	handful	handful	NOUN
ihlr-22948	75	34	of	of	ADP
ihlr-22948	75	35	individuals	individual	NOUN
ihlr-22948	75	36	worldwide.8	worldwide.8	VERB
ihlr-22948	75	37	information	information	NOUN
ihlr-22948	75	38	about	about	ADP
ihlr-22948	75	39	patients	patient	NOUN
ihlr-22948	75	40	with	with	ADP
ihlr-22948	75	41	these	these	DET
ihlr-22948	75	42	conditions	condition	NOUN
ihlr-22948	75	43	may	may	AUX
ihlr-22948	75	44	be	be	AUX
ihlr-22948	75	45	difficult	difficult	ADJ
ihlr-22948	75	46	to	to	PART
ihlr-22948	75	47	assemble	assemble	VERB
ihlr-22948	75	48	because	because	SCONJ
ihlr-22948	75	49	they	they	PRON
ihlr-22948	75	50	occur	occur	VERB
ihlr-22948	75	51	so	so	ADV
ihlr-22948	75	52	infrequently	infrequently	ADV
ihlr-22948	75	53	,	,	PUNCT
ihlr-22948	75	54	yet	yet	CCONJ
ihlr-22948	75	55	valid	valid	ADJ
ihlr-22948	75	56	studies	study	NOUN
ihlr-22948	75	57	require	require	VERB
ihlr-22948	75	58	adequate	adequate	ADJ
ihlr-22948	75	59	sample	sample	NOUN
ihlr-22948	75	60	sizes	size	NOUN
ihlr-22948	75	61	.	.	PUNCT
ihlr-22948	76	1	registries	registry	NOUN
ihlr-22948	76	2	have	have	AUX
ihlr-22948	76	3	been	be	AUX
ihlr-22948	76	4	developed	develop	VERB
ihlr-22948	76	5	to	to	PART
ihlr-22948	76	6	address	address	VERB
ihlr-22948	76	7	this	this	DET
ihlr-22948	76	8	challenge	challenge	NOUN
ihlr-22948	76	9	.	.	PUNCT
ihlr-22948	77	1	in	in	ADP
ihlr-22948	77	2	their	their	PRON
ihlr-22948	77	3	simplest	simple	ADJ
ihlr-22948	77	4	form	form	NOUN
ihlr-22948	77	5	,	,	PUNCT
ihlr-22948	77	6	these	these	DET
ihlr-22948	77	7	rare	rare	ADJ
ihlr-22948	77	8	disease	disease	NOUN
ihlr-22948	77	9	registries	registry	NOUN
ihlr-22948	77	10	collect	collect	VERB
ihlr-22948	77	11	contact	contact	NOUN
ihlr-22948	77	12	information	information	NOUN
ihlr-22948	77	13	about	about	ADP
ihlr-22948	77	14	patients	patient	NOUN
ihlr-22948	77	15	with	with	ADP
ihlr-22948	77	16	an	an	DET
ihlr-22948	77	17	identified	identify	VERB
ihlr-22948	77	18	condition	condition	NOUN
ihlr-22948	77	19	who	who	PRON
ihlr-22948	77	20	may	may	AUX
ihlr-22948	77	21	be	be	AUX
ihlr-22948	77	22	interested	interested	ADJ
ihlr-22948	77	23	in	in	ADP
ihlr-22948	77	24	entering	enter	VERB
ihlr-22948	77	25	research	research	NOUN
ihlr-22948	77	26	studies	study	NOUN
ihlr-22948	77	27	devoted	devote	VERB
ihlr-22948	77	28	to	to	ADP
ihlr-22948	77	29	their	their	PRON
ihlr-22948	77	30	disease	disease	NOUN
ihlr-22948	77	31	and	and	CCONJ
ihlr-22948	77	32	who	who	PRON
ihlr-22948	77	33	otherwise	otherwise	ADV
ihlr-22948	77	34	might	might	AUX
ihlr-22948	77	35	be	be	AUX
ihlr-22948	77	36	very	very	ADV
ihlr-22948	77	37	difficult	difficult	ADJ
ihlr-22948	77	38	to	to	PART
ihlr-22948	77	39	contact	contact	VERB
ihlr-22948	77	40	in	in	ADP
ihlr-22948	77	41	a	a	DET
ihlr-22948	77	42	coordinated	coordinated	ADJ
ihlr-22948	77	43	way	way	NOUN
ihlr-22948	77	44	.	.	PUNCT
ihlr-22948	78	1	for	for	ADP
ihlr-22948	78	2	example	example	NOUN
ihlr-22948	78	3	,	,	PUNCT
ihlr-22948	78	4	the	the	DET
ihlr-22948	78	5	rare	rare	ADJ
ihlr-22948	78	6	diseases	disease	NOUN
ihlr-22948	78	7	clinical	clinical	ADJ
ihlr-22948	78	8	research	research	NOUN
ihlr-22948	78	9	network	network	NOUN
ihlr-22948	78	10	of	of	ADP
ihlr-22948	78	11	the	the	DET
ihlr-22948	78	12	national	national	ADJ
ihlr-22948	78	13	center	center	NOUN
ihlr-22948	78	14	for	for	ADP
ihlr-22948	78	15	advancing	advance	VERB
ihlr-22948	78	16	translational	translational	ADJ
ihlr-22948	78	17	science	science	NOUN
ihlr-22948	78	18	maintains	maintain	VERB
ihlr-22948	78	19	a	a	DET
ihlr-22948	78	20	contact	contact	NOUN
ihlr-22948	78	21	registry	registry	NOUN
ihlr-22948	78	22	for	for	SCONJ
ihlr-22948	78	23	patients	patient	NOUN
ihlr-22948	78	24	to	to	PART
ihlr-22948	78	25	sign	sign	VERB
ihlr-22948	78	26	up	up	ADP
ihlr-22948	78	27	,	,	PUNCT
ihlr-22948	78	28	describe	describe	VERB
ihlr-22948	78	29	their	their	PRON
ihlr-22948	78	30	conditions	condition	NOUN
ihlr-22948	78	31	,	,	PUNCT
ihlr-22948	78	32	and	and	CCONJ
ihlr-22948	78	33	be	be	AUX
ihlr-22948	78	34	open	open	ADJ
ihlr-22948	78	35	to	to	ADP
ihlr-22948	78	36	contact	contact	VERB
ihlr-22948	78	37	for	for	ADP
ihlr-22948	78	38	participation	participation	NOUN
ihlr-22948	78	39	in	in	ADP
ihlr-22948	78	40	clinical	clinical	ADJ
ihlr-22948	78	41	studies.9	studies.9	NOUN
ihlr-22948	78	42	the	the	DET
ihlr-22948	78	43	coordination	coordination	NOUN
ihlr-22948	78	44	of	of	ADP
ihlr-22948	78	45	rare	rare	ADJ
ihlr-22948	78	46	diseases	disease	NOUN
ihlr-22948	78	47	registry	registry	NOUN
ihlr-22948	78	48	at	at	ADP
ihlr-22948	78	49	sanford	sanford	PROPN
ihlr-22948	78	50	research	research	PROPN
ihlr-22948	78	51	aims	aim	VERB
ihlr-22948	78	52	to	to	PART
ihlr-22948	78	53	work	work	VERB
ihlr-22948	78	54	with	with	ADP
ihlr-22948	78	55	patient	patient	ADJ
ihlr-22948	78	56	advocacy	advocacy	NOUN
ihlr-22948	78	57	groups	group	NOUN
ihlr-22948	78	58	to	to	PART
ihlr-22948	78	59	create	create	VERB
ihlr-22948	78	60	[	[	X
ihlr-22948	78	61	https://perma.cc/m664-x2l3	https://perma.cc/m664-x2l3	X
ihlr-22948	78	62	]	]	X
ihlr-22948	78	63	(	(	PUNCT
ihlr-22948	78	64	discussing	discuss	VERB
ihlr-22948	78	65	registry	registry	NOUN
ihlr-22948	78	66	of	of	ADP
ihlr-22948	78	67	genetic	genetic	ADJ
ihlr-22948	78	68	tests	test	NOUN
ihlr-22948	78	69	)	)	PUNCT
ihlr-22948	78	70	.	.	PUNCT
ihlr-22948	79	1	6	6	X
ihlr-22948	79	2	.	.	X
ihlr-22948	79	3	for	for	ADP
ihlr-22948	79	4	example	example	NOUN
ihlr-22948	79	5	,	,	PUNCT
ihlr-22948	79	6	the	the	DET
ihlr-22948	79	7	u.s	u.s	PROPN
ihlr-22948	79	8	.	.	PROPN
ihlr-22948	79	9	fda	fda	PROPN
ihlr-22948	79	10	is	be	AUX
ihlr-22948	79	11	now	now	ADV
ihlr-22948	79	12	facilitating	facilitate	VERB
ihlr-22948	79	13	a	a	DET
ihlr-22948	79	14	public	public	ADJ
ihlr-22948	79	15	-	-	PUNCT
ihlr-22948	79	16	private	private	ADJ
ihlr-22948	79	17	partnership	partnership	NOUN
ihlr-22948	79	18	to	to	PART
ihlr-22948	79	19	facilitate	facilitate	VERB
ihlr-22948	79	20	collaboration	collaboration	NOUN
ihlr-22948	79	21	among	among	ADP
ihlr-22948	79	22	the	the	DET
ihlr-22948	79	23	over	over	ADP
ihlr-22948	79	24	30	30	NUM
ihlr-22948	79	25	orthopedic	orthopedic	ADJ
ihlr-22948	79	26	registries	registry	NOUN
ihlr-22948	79	27	now	now	ADV
ihlr-22948	79	28	in	in	ADP
ihlr-22948	79	29	existence	existence	NOUN
ihlr-22948	79	30	.	.	PUNCT
ihlr-22948	80	1	int’l	int’l	PRON
ihlr-22948	80	2	consortium	consortium	ADJ
ihlr-22948	80	3	orthopaedic	orthopaedic	ADJ
ihlr-22948	80	4	registries	registry	NOUN
ihlr-22948	80	5	,	,	PUNCT
ihlr-22948	80	6	http://www.icor-initiative.org	http://www.icor-initiative.org	X
ihlr-22948	80	7	[	[	X
ihlr-22948	80	8	https://perma.cc/7j77-2u5	https://perma.cc/7j77-2u5	X
ihlr-22948	80	9	g	g	NOUN
ihlr-22948	80	10	]	]	X
ihlr-22948	80	11	.	.	PUNCT
ihlr-22948	81	1	7	7	X
ihlr-22948	81	2	.	.	X
ihlr-22948	81	3	faqs	faq	NOUN
ihlr-22948	81	4	about	about	ADP
ihlr-22948	81	5	rare	rare	ADJ
ihlr-22948	81	6	diseases	disease	NOUN
ihlr-22948	81	7	,	,	PUNCT
ihlr-22948	81	8	nat’l	nat’l	PROPN
ihlr-22948	81	9	ctr	ctr	PROPN
ihlr-22948	81	10	.	.	PUNCT
ihlr-22948	82	1	for	for	ADP
ihlr-22948	82	2	advancing	advance	VERB
ihlr-22948	82	3	translational	translational	ADJ
ihlr-22948	82	4	sciences	science	NOUN
ihlr-22948	82	5	,	,	PUNCT
ihlr-22948	82	6	genetic	genetic	ADJ
ihlr-22948	82	7	&	&	CCONJ
ihlr-22948	82	8	rare	rare	ADJ
ihlr-22948	82	9	disease	disease	NOUN
ihlr-22948	82	10	info	info	NOUN
ihlr-22948	82	11	.	.	PUNCT
ihlr-22948	82	12	ctr	ctr	PROPN
ihlr-22948	82	13	.	.	PROPN
ihlr-22948	82	14	,	,	PUNCT
ihlr-22948	82	15	https://rarediseases.info.nih.gov/diseases/pages/31/faqsabout-rare-diseases	https://rarediseases.info.nih.gov/diseases/pages/31/faqsabout-rare-disease	VERB
ihlr-22948	83	1	[	[	X
ihlr-22948	83	2	https://perma.cc/bs65-7x6e	https://perma.cc/bs65-7x6e	X
ihlr-22948	83	3	]	]	X
ihlr-22948	83	4	(	(	PUNCT
ihlr-22948	83	5	last	last	ADV
ihlr-22948	83	6	updated	update	VERB
ihlr-22948	83	7	nov	nov	PROPN
ihlr-22948	83	8	.	.	PROPN
ihlr-22948	83	9	30	30	NUM
ihlr-22948	83	10	,	,	PUNCT
ihlr-22948	83	11	2017	2017	NUM
ihlr-22948	83	12	)	)	PUNCT
ihlr-22948	83	13	.	.	PUNCT
ihlr-22948	84	1	the	the	DET
ihlr-22948	84	2	u.s	u.s	PROPN
ihlr-22948	84	3	.	.	PROPN
ihlr-22948	84	4	classification	classification	NOUN
ihlr-22948	84	5	of	of	ADP
ihlr-22948	84	6	a	a	DET
ihlr-22948	84	7	disease	disease	NOUN
ihlr-22948	84	8	as	as	ADP
ihlr-22948	84	9	“	"	PUNCT
ihlr-22948	84	10	rare	rare	ADJ
ihlr-22948	84	11	”	"	PUNCT
ihlr-22948	84	12	comes	come	VERB
ihlr-22948	84	13	from	from	ADP
ihlr-22948	84	14	the	the	DET
ihlr-22948	84	15	orphan	orphan	NOUN
ihlr-22948	84	16	drug	drug	NOUN
ihlr-22948	84	17	act	act	NOUN
ihlr-22948	84	18	of	of	ADP
ihlr-22948	84	19	1983	1983	NUM
ihlr-22948	84	20	.	.	PUNCT
ihlr-22948	85	1	i	i	PRON
ihlr-22948	85	2	d.	d.	PROPN
ihlr-22948	85	3	the	the	DET
ihlr-22948	85	4	european	european	PROPN
ihlr-22948	85	5	union	union	PROPN
ihlr-22948	85	6	classifies	classify	VERB
ihlr-22948	85	7	a	a	DET
ihlr-22948	85	8	disease	disease	NOUN
ihlr-22948	85	9	as	as	ADV
ihlr-22948	85	10	rare	rare	ADJ
ihlr-22948	85	11	if	if	SCONJ
ihlr-22948	85	12	it	it	PRON
ihlr-22948	85	13	occurs	occur	VERB
ihlr-22948	85	14	in	in	ADP
ihlr-22948	85	15	fewer	few	ADJ
ihlr-22948	85	16	than	than	ADP
ihlr-22948	85	17	one	one	NUM
ihlr-22948	85	18	out	out	ADP
ihlr-22948	85	19	of	of	ADP
ihlr-22948	85	20	2,000	2,000	NUM
ihlr-22948	85	21	patients	patient	NOUN
ihlr-22948	85	22	.	.	PUNCT
ihlr-22948	86	1	i	i	PRON
ihlr-22948	86	2	d.	d.	PROPN
ihlr-22948	86	3	8	8	NUM
ihlr-22948	86	4	.	.	PUNCT
ihlr-22948	87	1	examples	example	NOUN
ihlr-22948	87	2	of	of	ADP
ihlr-22948	87	3	extremely	extremely	ADV
ihlr-22948	87	4	rare	rare	ADJ
ihlr-22948	87	5	conditions	condition	NOUN
ihlr-22948	87	6	include	include	VERB
ihlr-22948	87	7	hutchinson	hutchinson	PROPN
ihlr-22948	87	8	-	-	PUNCT
ihlr-22948	87	9	gilford	gilford	PROPN
ihlr-22948	87	10	progeria	progeria	NOUN
ihlr-22948	87	11	,	,	PUNCT
ihlr-22948	87	12	a	a	DET
ihlr-22948	87	13	premature	premature	ADJ
ihlr-22948	87	14	aging	age	VERB
ihlr-22948	87	15	syndrome	syndrome	NOUN
ihlr-22948	87	16	diagnosed	diagnose	VERB
ihlr-22948	87	17	in	in	ADP
ihlr-22948	87	18	130	130	NUM
ihlr-22948	87	19	patients	patient	NOUN
ihlr-22948	87	20	since	since	SCONJ
ihlr-22948	87	21	it	it	PRON
ihlr-22948	87	22	was	be	AUX
ihlr-22948	87	23	first	first	ADV
ihlr-22948	87	24	identified	identify	VERB
ihlr-22948	87	25	in	in	ADP
ihlr-22948	87	26	1886	1886	NUM
ihlr-22948	87	27	,	,	PUNCT
ihlr-22948	87	28	hutchinson	hutchinson	PROPN
ihlr-22948	87	29	-	-	PUNCT
ihlr-22948	87	30	gilford	gilford	PROPN
ihlr-22948	87	31	progeria	progeria	NOUN
ihlr-22948	87	32	syndrome	syndrome	NOUN
ihlr-22948	87	33	,	,	PUNCT
ihlr-22948	87	34	genetics	genetics	NOUN
ihlr-22948	87	35	home	home	NOUN
ihlr-22948	87	36	ref	ref	NOUN
ihlr-22948	87	37	.	.	PUNCT
ihlr-22948	88	1	(	(	PUNCT
ihlr-22948	88	2	oct	oct	PROPN
ihlr-22948	88	3	.	.	PROPN
ihlr-22948	88	4	16	16	NUM
ihlr-22948	88	5	,	,	PUNCT
ihlr-22948	88	6	2018	2018	NUM
ihlr-22948	88	7	)	)	PUNCT
ihlr-22948	88	8	,	,	PUNCT
ihlr-22948	88	9	https://ghr.nlm.nih.gov/condition/	https://ghr.nlm.nih.gov/condition/	PROPN
ihlr-22948	88	10	hutchinson	hutchinson	PROPN
ihlr-22948	88	11	-	-	PUNCT
ihlr-22948	88	12	gilford	gilford	PROPN
ihlr-22948	88	13	-	-	PUNCT
ihlr-22948	88	14	progeria	progeria	NOUN
ihlr-22948	88	15	-	-	NOUN
ihlr-22948	88	16	syndrome#statistics	syndrome#statistic	NOUN
ihlr-22948	89	1	[	[	X
ihlr-22948	89	2	https://perma.cc/2al8-dh8a	https://perma.cc/2al8-dh8a	X
ihlr-22948	89	3	]	]	X
ihlr-22948	89	4	,	,	PUNCT
ihlr-22948	89	5	and	and	CCONJ
ihlr-22948	89	6	fields	field	VERB
ihlr-22948	89	7	condition	condition	NOUN
ihlr-22948	89	8	,	,	PUNCT
ihlr-22948	89	9	a	a	DET
ihlr-22948	89	10	progressive	progressive	ADJ
ihlr-22948	89	11	neuromuscular	neuromuscular	ADJ
ihlr-22948	89	12	condition	condition	NOUN
ihlr-22948	89	13	diagnosed	diagnose	VERB
ihlr-22948	89	14	only	only	ADV
ihlr-22948	89	15	in	in	ADP
ihlr-22948	89	16	the	the	DET
ihlr-22948	89	17	two	two	NUM
ihlr-22948	89	18	twins	twin	NOUN
ihlr-22948	89	19	who	who	PRON
ihlr-22948	89	20	have	have	VERB
ihlr-22948	89	21	it	it	PRON
ihlr-22948	89	22	,	,	PUNCT
ihlr-22948	89	23	what	what	PRON
ihlr-22948	89	24	is	be	AUX
ihlr-22948	89	25	it	it	PRON
ihlr-22948	89	26	like	like	ADJ
ihlr-22948	89	27	to	to	PART
ihlr-22948	89	28	live	live	VERB
ihlr-22948	89	29	with	with	ADP
ihlr-22948	89	30	a	a	DET
ihlr-22948	89	31	rare	rare	ADJ
ihlr-22948	89	32	disease	disease	NOUN
ihlr-22948	89	33	?	?	PUNCT
ihlr-22948	89	34	,	,	PUNCT
ihlr-22948	89	35	nrs	nrs	PROPN
ihlr-22948	89	36	healthcare	healthcare	PROPN
ihlr-22948	89	37	(	(	PUNCT
ihlr-22948	89	38	feb	feb	PROPN
ihlr-22948	89	39	.	.	PROPN
ihlr-22948	89	40	27	27	NUM
ihlr-22948	89	41	,	,	PUNCT
ihlr-22948	89	42	2018	2018	NUM
ihlr-22948	89	43	)	)	PUNCT
ihlr-22948	89	44	,	,	PUNCT
ihlr-22948	89	45	https://www	https://www	PROPN
ihlr-22948	89	46	.	.	PUNCT
ihlr-22948	90	1	nrshealthcare.co.uk/articles/news/what-is-it-like-to-live-with-a-rare-disease	nrshealthcare.co.uk/articles/news/what-is-it-like-to-live-with-a-rare-disease	PROPN
ihlr-22948	91	1	[	[	X
ihlr-22948	91	2	https://perma.cc/	https://perma.cc/	VERB
ihlr-22948	91	3	mu4c	mu4c	PROPN
ihlr-22948	91	4	-	-	PUNCT
ihlr-22948	91	5	e5hr	e5hr	NOUN
ihlr-22948	91	6	]	]	X
ihlr-22948	91	7	.	.	PUNCT
ihlr-22948	92	1	9	9	X
ihlr-22948	92	2	.	.	X
ihlr-22948	92	3	rdcrn	rdcrn	PROPN
ihlr-22948	92	4	contact	contact	PROPN
ihlr-22948	92	5	registry	registry	NOUN
ihlr-22948	92	6	,	,	PUNCT
ihlr-22948	92	7	rare	rare	ADJ
ihlr-22948	92	8	diseases	disease	NOUN
ihlr-22948	92	9	clinical	clinical	ADJ
ihlr-22948	92	10	res	re	NOUN
ihlr-22948	92	11	.	.	PUNCT
ihlr-22948	93	1	network	network	NOUN
ihlr-22948	93	2	,	,	PUNCT
ihlr-22948	93	3	https://www.rarediseasesnetwork.org/registry	https://www.rarediseasesnetwork.org/registry	X
ihlr-22948	94	1	[	[	X
ihlr-22948	94	2	https://perma.cc/j88e-5wez	https://perma.cc/j88e-5wez	PROPN
ihlr-22948	94	3	]	]	X
ihlr-22948	94	4	.	.	PUNCT
ihlr-22948	95	1	2018	2018	NUM
ihlr-22948	95	2	]	]	PUNCT
ihlr-22948	95	3	patient	patient	ADJ
ihlr-22948	95	4	registries	registry	NOUN
ihlr-22948	95	5	and	and	CCONJ
ihlr-22948	95	6	their	their	PRON
ihlr-22948	95	7	governance	governance	NOUN
ihlr-22948	95	8	47	47	NUM
ihlr-22948	95	9	registries	registry	NOUN
ihlr-22948	95	10	of	of	ADP
ihlr-22948	95	11	people	people	NOUN
ihlr-22948	95	12	with	with	ADP
ihlr-22948	95	13	diseases	disease	NOUN
ihlr-22948	95	14	such	such	ADJ
ihlr-22948	95	15	as	as	ADP
ihlr-22948	95	16	bohring	bohre	VERB
ihlr-22948	95	17	-	-	PUNCT
ihlr-22948	95	18	opitz	opitz	NOUN
ihlr-22948	95	19	syndrome	syndrome	NOUN
ihlr-22948	95	20	,	,	PUNCT
ihlr-22948	95	21	a	a	DET
ihlr-22948	95	22	rare	rare	ADJ
ihlr-22948	95	23	mutation	mutation	NOUN
ihlr-22948	95	24	in	in	ADP
ihlr-22948	95	25	the	the	DET
ihlr-22948	95	26	askl1	askl1	NOUN
ihlr-22948	95	27	gene.10	gene.10	NOUN
ihlr-22948	95	28	registries	registry	NOUN
ihlr-22948	95	29	devoted	devote	VERB
ihlr-22948	95	30	to	to	ADP
ihlr-22948	95	31	lysosomal	lysosomal	ADJ
ihlr-22948	95	32	storage	storage	NOUN
ihlr-22948	95	33	diseases	disease	NOUN
ihlr-22948	95	34	in	in	ADP
ihlr-22948	95	35	children	child	NOUN
ihlr-22948	95	36	are	be	AUX
ihlr-22948	95	37	another	another	DET
ihlr-22948	95	38	good	good	ADJ
ihlr-22948	95	39	example	example	NOUN
ihlr-22948	95	40	of	of	ADP
ihlr-22948	95	41	registries	registry	NOUN
ihlr-22948	95	42	aimed	aim	VERB
ihlr-22948	95	43	to	to	PART
ihlr-22948	95	44	assemble	assemble	VERB
ihlr-22948	95	45	sufficient	sufficient	ADJ
ihlr-22948	95	46	numbers	number	NOUN
ihlr-22948	95	47	of	of	ADP
ihlr-22948	95	48	individuals	individual	NOUN
ihlr-22948	95	49	with	with	ADP
ihlr-22948	95	50	unusual	unusual	ADJ
ihlr-22948	95	51	conditions	condition	NOUN
ihlr-22948	95	52	to	to	PART
ihlr-22948	95	53	enable	enable	VERB
ihlr-22948	95	54	sound	sound	NOUN
ihlr-22948	95	55	research	research	NOUN
ihlr-22948	95	56	studies.11	studies.11	NOUN
ihlr-22948	95	57	rare	rare	ADJ
ihlr-22948	95	58	disease	disease	NOUN
ihlr-22948	95	59	registries	registry	NOUN
ihlr-22948	95	60	may	may	AUX
ihlr-22948	95	61	also	also	ADV
ihlr-22948	95	62	aim	aim	VERB
ihlr-22948	95	63	to	to	PART
ihlr-22948	95	64	study	study	VERB
ihlr-22948	95	65	the	the	DET
ihlr-22948	95	66	natural	natural	ADJ
ihlr-22948	95	67	history	history	NOUN
ihlr-22948	95	68	of	of	ADP
ihlr-22948	95	69	these	these	DET
ihlr-22948	95	70	conditions	condition	NOUN
ihlr-22948	95	71	.	.	PUNCT
ihlr-22948	96	1	because	because	SCONJ
ihlr-22948	96	2	they	they	PRON
ihlr-22948	96	3	are	be	AUX
ihlr-22948	96	4	diagnosed	diagnose	VERB
ihlr-22948	96	5	so	so	ADV
ihlr-22948	96	6	infrequently	infrequently	ADV
ihlr-22948	96	7	,	,	PUNCT
ihlr-22948	96	8	little	little	ADJ
ihlr-22948	96	9	may	may	AUX
ihlr-22948	96	10	be	be	AUX
ihlr-22948	96	11	known	know	VERB
ihlr-22948	96	12	about	about	ADP
ihlr-22948	96	13	whether	whether	SCONJ
ihlr-22948	96	14	the	the	DET
ihlr-22948	96	15	course	course	NOUN
ihlr-22948	96	16	they	they	PRON
ihlr-22948	96	17	take	take	VERB
ihlr-22948	96	18	is	be	AUX
ihlr-22948	96	19	highly	highly	ADV
ihlr-22948	96	20	variable	variable	ADJ
ihlr-22948	96	21	in	in	ADP
ihlr-22948	96	22	different	different	ADJ
ihlr-22948	96	23	patients	patient	NOUN
ihlr-22948	96	24	or	or	CCONJ
ihlr-22948	96	25	indeed	indeed	ADV
ihlr-22948	96	26	whether	whether	SCONJ
ihlr-22948	96	27	there	there	PRON
ihlr-22948	96	28	are	be	VERB
ihlr-22948	96	29	patients	patient	NOUN
ihlr-22948	96	30	with	with	ADP
ihlr-22948	96	31	milder	mild	ADJ
ihlr-22948	96	32	forms	form	NOUN
ihlr-22948	96	33	of	of	ADP
ihlr-22948	96	34	the	the	DET
ihlr-22948	96	35	condition	condition	NOUN
ihlr-22948	96	36	who	who	PRON
ihlr-22948	96	37	have	have	AUX
ihlr-22948	96	38	not	not	PART
ihlr-22948	96	39	been	be	AUX
ihlr-22948	96	40	recognized	recognize	VERB
ihlr-22948	96	41	.	.	PUNCT
ihlr-22948	97	1	nord	nord	PROPN
ihlr-22948	97	2	now	now	ADV
ihlr-22948	97	3	has	have	VERB
ihlr-22948	97	4	a	a	DET
ihlr-22948	97	5	project	project	NOUN
ihlr-22948	97	6	to	to	PART
ihlr-22948	97	7	establish	establish	VERB
ihlr-22948	97	8	registries	registry	NOUN
ihlr-22948	97	9	to	to	PART
ihlr-22948	97	10	study	study	VERB
ihlr-22948	97	11	the	the	DET
ihlr-22948	97	12	natural	natural	ADJ
ihlr-22948	97	13	history	history	NOUN
ihlr-22948	97	14	of	of	ADP
ihlr-22948	97	15	20	20	NUM
ihlr-22948	97	16	rare	rare	ADJ
ihlr-22948	97	17	diseases	disease	NOUN
ihlr-22948	97	18	,	,	PUNCT
ihlr-22948	97	19	such	such	ADJ
ihlr-22948	97	20	as	as	ADP
ihlr-22948	97	21	galactosemia.12	galactosemia.12	PROPN
ihlr-22948	97	22	these	these	DET
ihlr-22948	97	23	registries	registry	NOUN
ihlr-22948	97	24	ask	ask	VERB
ihlr-22948	97	25	patients	patient	NOUN
ihlr-22948	97	26	(	(	PUNCT
ihlr-22948	97	27	or	or	CCONJ
ihlr-22948	97	28	their	their	PRON
ihlr-22948	97	29	family	family	NOUN
ihlr-22948	97	30	members	member	NOUN
ihlr-22948	97	31	on	on	ADP
ihlr-22948	97	32	their	their	PRON
ihlr-22948	97	33	behalf	behalf	NOUN
ihlr-22948	97	34	)	)	PUNCT
ihlr-22948	97	35	to	to	PART
ihlr-22948	97	36	update	update	VERB
ihlr-22948	97	37	information	information	NOUN
ihlr-22948	97	38	regularly	regularly	ADV
ihlr-22948	97	39	so	so	SCONJ
ihlr-22948	97	40	that	that	SCONJ
ihlr-22948	97	41	better	well	ADJ
ihlr-22948	97	42	understanding	understanding	NOUN
ihlr-22948	97	43	can	can	AUX
ihlr-22948	97	44	be	be	AUX
ihlr-22948	97	45	developed	develop	VERB
ihlr-22948	97	46	of	of	ADP
ihlr-22948	97	47	how	how	SCONJ
ihlr-22948	97	48	the	the	DET
ihlr-22948	97	49	disease	disease	NOUN
ihlr-22948	97	50	progresses	progress	VERB
ihlr-22948	97	51	in	in	ADP
ihlr-22948	97	52	different	different	ADJ
ihlr-22948	97	53	patients.13	patients.13	NOUN
ihlr-22948	97	54	the	the	DET
ihlr-22948	97	55	nord	nord	PROPN
ihlr-22948	97	56	project	project	NOUN
ihlr-22948	97	57	also	also	ADV
ihlr-22948	97	58	partners	partner	VERB
ihlr-22948	97	59	with	with	ADP
ihlr-22948	97	60	the	the	DET
ihlr-22948	97	61	food	food	NOUN
ihlr-22948	97	62	and	and	CCONJ
ihlr-22948	97	63	drug	drug	PROPN
ihlr-22948	97	64	administration	administration	NOUN
ihlr-22948	97	65	to	to	PART
ihlr-22948	97	66	identify	identify	VERB
ihlr-22948	97	67	patients	patient	NOUN
ihlr-22948	97	68	who	who	PRON
ihlr-22948	97	69	may	may	AUX
ihlr-22948	97	70	be	be	AUX
ihlr-22948	97	71	interested	interested	ADJ
ihlr-22948	97	72	in	in	ADP
ihlr-22948	97	73	participating	participate	VERB
ihlr-22948	97	74	in	in	ADP
ihlr-22948	97	75	clinical	clinical	ADJ
ihlr-22948	97	76	trials	trial	NOUN
ihlr-22948	97	77	aimed	aim	VERB
ihlr-22948	97	78	to	to	PART
ihlr-22948	97	79	develop	develop	VERB
ihlr-22948	97	80	potential	potential	ADJ
ihlr-22948	97	81	treatments	treatment	NOUN
ihlr-22948	97	82	for	for	ADP
ihlr-22948	97	83	these	these	DET
ihlr-22948	97	84	conditions.14	conditions.14	PROPN
ihlr-22948	97	85	registries	registry	NOUN
ihlr-22948	97	86	may	may	AUX
ihlr-22948	97	87	also	also	ADV
ihlr-22948	97	88	be	be	AUX
ihlr-22948	97	89	devoted	devote	VERB
ihlr-22948	97	90	to	to	ADP
ihlr-22948	97	91	improving	improve	VERB
ihlr-22948	97	92	treatment	treatment	NOUN
ihlr-22948	97	93	for	for	ADP
ihlr-22948	97	94	conditions	condition	NOUN
ihlr-22948	97	95	that	that	PRON
ihlr-22948	97	96	occur	occur	VERB
ihlr-22948	97	97	more	more	ADV
ihlr-22948	97	98	frequently	frequently	ADV
ihlr-22948	97	99	.	.	PUNCT
ihlr-22948	98	1	one	one	NUM
ihlr-22948	98	2	of	of	ADP
ihlr-22948	98	3	the	the	DET
ihlr-22948	98	4	longest	long	ADV
ihlr-22948	98	5	-	-	PUNCT
ihlr-22948	98	6	operating	operate	VERB
ihlr-22948	98	7	registries	registry	NOUN
ihlr-22948	98	8	is	be	AUX
ihlr-22948	98	9	the	the	DET
ihlr-22948	98	10	cystic	cystic	ADJ
ihlr-22948	98	11	fibrosis	fibrosis	NOUN
ihlr-22948	98	12	foundation	foundation	NOUN
ihlr-22948	98	13	patient	patient	PROPN
ihlr-22948	98	14	registry	registry	NOUN
ihlr-22948	98	15	which	which	PRON
ihlr-22948	98	16	contains	contain	VERB
ihlr-22948	98	17	nearly	nearly	ADV
ihlr-22948	98	18	30,000	30,000	NUM
ihlr-22948	98	19	patients	patient	NOUN
ihlr-22948	98	20	being	be	AUX
ihlr-22948	98	21	treated	treat	VERB
ihlr-22948	98	22	in	in	ADP
ihlr-22948	98	23	282	282	NUM
ihlr-22948	98	24	different	different	ADJ
ihlr-22948	98	25	programs	program	NOUN
ihlr-22948	98	26	offering	offer	VERB
ihlr-22948	98	27	care	care	NOUN
ihlr-22948	98	28	for	for	ADP
ihlr-22948	98	29	cf.15	cf.15	NOUN
ihlr-22948	98	30	in	in	ADP
ihlr-22948	98	31	addition	addition	NOUN
ihlr-22948	98	32	to	to	ADP
ihlr-22948	98	33	serving	serve	VERB
ihlr-22948	98	34	as	as	ADP
ihlr-22948	98	35	a	a	DET
ihlr-22948	98	36	resource	resource	NOUN
ihlr-22948	98	37	for	for	ADP
ihlr-22948	98	38	participation	participation	NOUN
ihlr-22948	98	39	in	in	ADP
ihlr-22948	98	40	clinical	clinical	ADJ
ihlr-22948	98	41	trials	trial	NOUN
ihlr-22948	98	42	and	and	CCONJ
ihlr-22948	98	43	research	research	NOUN
ihlr-22948	98	44	,	,	PUNCT
ihlr-22948	98	45	this	this	DET
ihlr-22948	98	46	registry	registry	NOUN
ihlr-22948	98	47	provides	provide	VERB
ihlr-22948	98	48	a	a	DET
ihlr-22948	98	49	resource	resource	NOUN
ihlr-22948	98	50	for	for	ADP
ihlr-22948	98	51	assessing	assess	VERB
ihlr-22948	98	52	approved	approved	ADJ
ihlr-22948	98	53	therapies	therapy	NOUN
ihlr-22948	98	54	,	,	PUNCT
ihlr-22948	98	55	for	for	ADP
ihlr-22948	98	56	comparing	compare	VERB
ihlr-22948	98	57	treatment	treatment	NOUN
ihlr-22948	98	58	options	option	NOUN
ihlr-22948	98	59	,	,	PUNCT
ihlr-22948	98	60	and	and	CCONJ
ihlr-22948	98	61	10	10	NUM
ihlr-22948	98	62	.	.	PUNCT
ihlr-22948	99	1	research	research	NOUN
ihlr-22948	99	2	with	with	ADP
ihlr-22948	99	3	cordr	cordr	PROPN
ihlr-22948	99	4	,	,	PUNCT
ihlr-22948	99	5	sanford	sanford	PROPN
ihlr-22948	99	6	res	res	PROPN
ihlr-22948	99	7	.	.	PUNCT
ihlr-22948	100	1	www.sanfordresearch.org/specialprograms/	www.sanfordresearch.org/specialprograms/	PROPN
ihlr-22948	100	2	cords	cords	PROPN
ihlr-22948	100	3	/	/	SYM
ihlr-22948	100	4	researchers/	researchers/	PROPN
ihlr-22948	101	1	[	[	X
ihlr-22948	101	2	https://perma.cc/38rv-fj9e	https://perma.cc/38rv-fj9e	NOUN
ihlr-22948	101	3	]	]	X
ihlr-22948	101	4	;	;	PUNCT
ihlr-22948	101	5	what	what	PRON
ihlr-22948	101	6	is	be	AUX
ihlr-22948	101	7	bos	bo	NOUN
ihlr-22948	101	8	?	?	PROPN
ihlr-22948	101	9	,	,	PUNCT
ihlr-22948	101	10	bohring	bohre	VERB
ihlr-22948	101	11	-	-	PUNCT
ihlr-22948	101	12	opitz	opitz	NOUN
ihlr-22948	101	13	found	find	VERB
ihlr-22948	101	14	.	.	PUNCT
ihlr-22948	101	15	,	,	PUNCT
ihlr-22948	101	16	http://bos-foundation.org/whatisbos	http://bos-foundation.org/whatisbos	X
ihlr-22948	102	1	[	[	X
ihlr-22948	102	2	https://perma.cc/zkl6-x4vu	https://perma.cc/zkl6-x4vu	NOUN
ihlr-22948	102	3	]	]	X
ihlr-22948	102	4	.	.	PUNCT
ihlr-22948	103	1	11	11	NUM
ihlr-22948	103	2	.	.	X
ihlr-22948	103	3	see	see	VERB
ihlr-22948	103	4	e.g.	e.g.	ADV
ihlr-22948	103	5	,	,	PUNCT
ihlr-22948	103	6	simon	simon	PROPN
ihlr-22948	103	7	jones	jones	PROPN
ihlr-22948	103	8	et	et	PROPN
ihlr-22948	103	9	al	al	PROPN
ihlr-22948	103	10	.	.	PROPN
ihlr-22948	103	11	,	,	PUNCT
ihlr-22948	103	12	disease	disease	NOUN
ihlr-22948	103	13	registries	registry	NOUN
ihlr-22948	103	14	and	and	CCONJ
ihlr-22948	103	15	outcomes	outcome	NOUN
ihlr-22948	103	16	research	research	VERB
ihlr-22948	103	17	in	in	ADP
ihlr-22948	103	18	children	child	NOUN
ihlr-22948	103	19	:	:	PUNCT
ihlr-22948	103	20	focus	focus	VERB
ihlr-22948	103	21	on	on	ADP
ihlr-22948	103	22	lysosomal	lysosomal	ADJ
ihlr-22948	103	23	storage	storage	NOUN
ihlr-22948	103	24	disorders	disorder	NOUN
ihlr-22948	103	25	,	,	PUNCT
ihlr-22948	103	26	13	13	NUM
ihlr-22948	103	27	pediatric	pediatric	ADJ
ihlr-22948	103	28	drugs	drug	NOUN
ihlr-22948	103	29	33	33	NUM
ihlr-22948	103	30	(	(	PUNCT
ihlr-22948	103	31	2011	2011	NUM
ihlr-22948	103	32	)	)	PUNCT
ihlr-22948	103	33	.	.	PUNCT
ihlr-22948	104	1	12	12	NUM
ihlr-22948	104	2	.	.	PUNCT
ihlr-22948	104	3	nord	nord	PROPN
ihlr-22948	104	4	-	-	PUNCT
ihlr-22948	104	5	fda	fda	PROPN
ihlr-22948	104	6	natural	natural	ADJ
ihlr-22948	104	7	history	history	NOUN
ihlr-22948	104	8	study	study	NOUN
ihlr-22948	104	9	frequently	frequently	ADV
ihlr-22948	104	10	asked	ask	VERB
ihlr-22948	104	11	questions	question	NOUN
ihlr-22948	104	12	,	,	PUNCT
ihlr-22948	104	13	nat’l	nat’l	X
ihlr-22948	104	14	org	org	NOUN
ihlr-22948	104	15	.	.	PUNCT
ihlr-22948	105	1	for	for	ADP
ihlr-22948	105	2	rare	rare	ADJ
ihlr-22948	105	3	disorders	disorder	NOUN
ihlr-22948	105	4	,	,	PUNCT
ihlr-22948	105	5	https://rarediseases.org/for-patient-organizations/ways-partner/patient-registries/nordfda-natural-history-study-faq/	https://rarediseases.org/for-patient-organizations/ways-partner/patient-registries/nordfda-natural-history-study-faq/	X
ihlr-22948	105	6	[	[	X
ihlr-22948	105	7	https://perma.cc/cjg7-e93w	https://perma.cc/cjg7-e93w	X
ihlr-22948	105	8	]	]	X
ihlr-22948	105	9	;	;	PUNCT
ihlr-22948	105	10	press	press	NOUN
ihlr-22948	105	11	release	release	NOUN
ihlr-22948	105	12	,	,	PUNCT
ihlr-22948	105	13	national	national	ADJ
ihlr-22948	105	14	organization	organization	NOUN
ihlr-22948	105	15	for	for	ADP
ihlr-22948	105	16	rare	rare	ADJ
ihlr-22948	105	17	disorders	disorder	NOUN
ihlr-22948	105	18	,	,	PUNCT
ihlr-22948	105	19	nord	nord	PROPN
ihlr-22948	105	20	announces	announce	VERB
ihlr-22948	105	21	20	20	NUM
ihlr-22948	105	22	rare	rare	ADJ
ihlr-22948	105	23	disease	disease	NOUN
ihlr-22948	105	24	patient	patient	NOUN
ihlr-22948	105	25	groups	group	NOUN
ihlr-22948	105	26	selected	select	VERB
ihlr-22948	105	27	to	to	PART
ihlr-22948	105	28	develop	develop	VERB
ihlr-22948	105	29	natural	natural	ADJ
ihlr-22948	105	30	history	history	NOUN
ihlr-22948	105	31	studies	study	NOUN
ihlr-22948	105	32	as	as	ADP
ihlr-22948	105	33	part	part	NOUN
ihlr-22948	105	34	of	of	ADP
ihlr-22948	105	35	fda	fda	PROPN
ihlr-22948	105	36	cooperative	cooperative	ADJ
ihlr-22948	105	37	agreement	agreement	NOUN
ihlr-22948	105	38	(	(	PUNCT
ihlr-22948	105	39	apr	apr	PROPN
ihlr-22948	105	40	.	.	PROPN
ihlr-22948	105	41	19	19	NUM
ihlr-22948	105	42	,	,	PUNCT
ihlr-22948	105	43	2016	2016	NUM
ihlr-22948	105	44	)	)	PUNCT
ihlr-22948	105	45	,	,	PUNCT
ihlr-22948	105	46	https://rarediseases.org/	https://rarediseases.org/	PRON
ihlr-22948	105	47	nord	nord	PROPN
ihlr-22948	105	48	-	-	PUNCT
ihlr-22948	105	49	announces-20	announces-20	ADJ
ihlr-22948	105	50	-	-	PUNCT
ihlr-22948	105	51	rare	rare	ADJ
ihlr-22948	105	52	-	-	PUNCT
ihlr-22948	105	53	disease	disease	NOUN
ihlr-22948	105	54	-	-	PUNCT
ihlr-22948	105	55	patient	patient	NOUN
ihlr-22948	105	56	-	-	PUNCT
ihlr-22948	105	57	groups	group	NOUN
ihlr-22948	105	58	-	-	PUNCT
ihlr-22948	105	59	selected	select	VERB
ihlr-22948	105	60	-	-	PUNCT
ihlr-22948	105	61	to	to	ADP
ihlr-22948	105	62	-	-	PUNCT
ihlr-22948	105	63	develop	develop	VERB
ihlr-22948	105	64	-	-	PUNCT
ihlr-22948	105	65	natural	natural	ADJ
ihlr-22948	105	66	-	-	PUNCT
ihlr-22948	105	67	history	history	NOUN
ihlr-22948	105	68	-	-	PUNCT
ihlr-22948	105	69	studies	study	NOUN
ihlr-22948	105	70	-	-	PUNCT
ihlr-22948	105	71	as	as	ADP
ihlr-22948	105	72	-	-	PUNCT
ihlr-22948	105	73	partof	partof	ADJ
ihlr-22948	105	74	-	-	PUNCT
ihlr-22948	105	75	fda	fda	ADJ
ihlr-22948	105	76	-	-	PUNCT
ihlr-22948	105	77	cooperative	cooperative	NOUN
ihlr-22948	105	78	-	-	PUNCT
ihlr-22948	105	79	agreement/	agreement/	NUM
ihlr-22948	106	1	[	[	X
ihlr-22948	106	2	https://perma.cc/bl3e-b8zg	https://perma.cc/bl3e-b8zg	X
ihlr-22948	106	3	]	]	X
ihlr-22948	106	4	.	.	PUNCT
ihlr-22948	107	1	13	13	NUM
ihlr-22948	107	2	.	.	PUNCT
ihlr-22948	108	1	pamela	pamela	PROPN
ihlr-22948	108	2	gavin	gavin	PROPN
ihlr-22948	108	3	,	,	PUNCT
ihlr-22948	108	4	the	the	DET
ihlr-22948	108	5	importance	importance	NOUN
ihlr-22948	108	6	of	of	ADP
ihlr-22948	108	7	natural	natural	ADJ
ihlr-22948	108	8	histories	history	NOUN
ihlr-22948	108	9	for	for	ADP
ihlr-22948	108	10	rare	rare	ADJ
ihlr-22948	108	11	diseases	disease	NOUN
ihlr-22948	108	12	,	,	PUNCT
ihlr-22948	108	13	3	3	NUM
ihlr-22948	108	14	expert	expert	NOUN
ihlr-22948	108	15	opinion	opinion	NOUN
ihlr-22948	108	16	on	on	ADP
ihlr-22948	108	17	orphan	orphan	NOUN
ihlr-22948	108	18	drugs	drug	NOUN
ihlr-22948	108	19	855	855	NUM
ihlr-22948	108	20	(	(	PUNCT
ihlr-22948	108	21	2015	2015	NUM
ihlr-22948	108	22	)	)	PUNCT
ihlr-22948	108	23	.	.	PUNCT
ihlr-22948	109	1	14	14	NUM
ihlr-22948	109	2	.	.	PUNCT
ihlr-22948	109	3	information	information	NOUN
ihlr-22948	109	4	on	on	ADP
ihlr-22948	109	5	clinical	clinical	ADJ
ihlr-22948	109	6	trials	trial	NOUN
ihlr-22948	109	7	and	and	CCONJ
ihlr-22948	109	8	research	research	NOUN
ihlr-22948	109	9	studies	study	NOUN
ihlr-22948	109	10	nat’l	nat’l	PROPN
ihlr-22948	109	11	org	org	NOUN
ihlr-22948	109	12	.	.	PUNCT
ihlr-22948	110	1	for	for	ADP
ihlr-22948	110	2	rare	rare	ADJ
ihlr-22948	110	3	disorders	disorder	NOUN
ihlr-22948	110	4	,	,	PUNCT
ihlr-22948	110	5	https://rarediseases.org/for-patients-and-families/information-resources/info-clinical-trials-andresearch-studies/	https://rarediseases.org/for-patients-and-families/information-resources/info-clinical-trials-andresearch-studies/	NOUN
ihlr-22948	110	6	[	[	X
ihlr-22948	110	7	https://perma.cc/v3ce-qv88	https://perma.cc/v3ce-qv88	NOUN
ihlr-22948	110	8	]	]	X
ihlr-22948	110	9	;	;	PUNCT
ihlr-22948	110	10	anne	anne	PROPN
ihlr-22948	110	11	r.	r.	PROPN
ihlr-22948	110	12	pariser	pariser	PROPN
ihlr-22948	110	13	,	,	PUNCT
ihlr-22948	110	14	importance	importance	NOUN
ihlr-22948	110	15	of	of	ADP
ihlr-22948	110	16	natural	natural	ADJ
ihlr-22948	110	17	history	history	NOUN
ihlr-22948	110	18	studies	study	NOUN
ihlr-22948	110	19	in	in	ADP
ihlr-22948	110	20	rare	rare	ADJ
ihlr-22948	110	21	diseases	disease	NOUN
ihlr-22948	110	22	,	,	PUNCT
ihlr-22948	110	23	https://events-support.com/documents/pariser.pdf	https://events-support.com/documents/pariser.pdf	NOUN
ihlr-22948	110	24	[	[	X
ihlr-22948	110	25	https://perma.cc/	https://perma.cc/	PROPN
ihlr-22948	110	26	lwc2	lwc2	NOUN
ihlr-22948	110	27	-	-	PUNCT
ihlr-22948	110	28	389e	389e	PROPN
ihlr-22948	110	29	]	]	PUNCT
ihlr-22948	110	30	.	.	PUNCT
ihlr-22948	111	1	15	15	X
ihlr-22948	111	2	.	.	PUNCT
ihlr-22948	112	1	cystic	cystic	ADJ
ihlr-22948	112	2	fibrosis	fibrosis	NOUN
ihlr-22948	112	3	foundation	foundation	NOUN
ihlr-22948	112	4	patient	patient	PROPN
ihlr-22948	112	5	registry	registry	PROPN
ihlr-22948	112	6	highlights	highlight	NOUN
ihlr-22948	112	7	,	,	PUNCT
ihlr-22948	112	8	cystic	cystic	ADJ
ihlr-22948	112	9	fibrosis	fibrosis	NOUN
ihlr-22948	112	10	found	find	VERB
ihlr-22948	112	11	.	.	PUNCT
ihlr-22948	113	1	(	(	PUNCT
ihlr-22948	113	2	2017	2017	NUM
ihlr-22948	113	3	)	)	PUNCT
ihlr-22948	113	4	,	,	PUNCT
ihlr-22948	113	5	https://www.cff.org/research/researcher-resources/patient-registry/2017-cystic-fibrosisfoundation-patient-registry-highlights.pdf	https://www.cff.org/research/researcher-resources/patient-registry/2017-cystic-fibrosisfoundation-patient-registry-highlights.pdf	VERB
ihlr-22948	114	1	[	[	X
ihlr-22948	114	2	https://perma.cc/wlh2-ctgp	https://perma.cc/wlh2-ctgp	X
ihlr-22948	114	3	]	]	X
ihlr-22948	114	4	.	.	PUNCT
ihlr-22948	115	1	48	48	NUM
ihlr-22948	115	2	indiana	indiana	PROPN
ihlr-22948	115	3	health	health	PROPN
ihlr-22948	115	4	law	law	PROPN
ihlr-22948	115	5	review	review	NOUN
ihlr-22948	115	6	[	[	X
ihlr-22948	115	7	vol	vol	NOUN
ihlr-22948	115	8	.	.	PUNCT
ihlr-22948	115	9	16:43	16:43	NUM
ihlr-22948	115	10	for	for	ADP
ihlr-22948	115	11	improving	improve	VERB
ihlr-22948	115	12	care	care	NOUN
ihlr-22948	115	13	quality.16	quality.16	PROPN
ihlr-22948	115	14	registry	registry	PROPN
ihlr-22948	115	15	development	development	PROPN
ihlr-22948	115	16	also	also	ADV
ihlr-22948	115	17	serves	serve	VERB
ihlr-22948	115	18	implementation	implementation	NOUN
ihlr-22948	115	19	of	of	ADP
ihlr-22948	115	20	learning	learn	VERB
ihlr-22948	115	21	health	health	NOUN
ihlr-22948	115	22	care	care	NOUN
ihlr-22948	115	23	systems	system	NOUN
ihlr-22948	115	24	.	.	PUNCT
ihlr-22948	116	1	the	the	DET
ihlr-22948	116	2	idea	idea	NOUN
ihlr-22948	116	3	of	of	ADP
ihlr-22948	116	4	a	a	DET
ihlr-22948	116	5	learning	learn	VERB
ihlr-22948	116	6	healthcare	healthcare	NOUN
ihlr-22948	116	7	system	system	NOUN
ihlr-22948	116	8	is	be	AUX
ihlr-22948	116	9	to	to	PART
ihlr-22948	116	10	continuously	continuously	ADV
ihlr-22948	116	11	capture	capture	VERB
ihlr-22948	116	12	and	and	CCONJ
ihlr-22948	116	13	present	present	VERB
ihlr-22948	116	14	the	the	DET
ihlr-22948	116	15	best	well	ADV
ihlr-22948	116	16	available	available	ADJ
ihlr-22948	116	17	evidence	evidence	NOUN
ihlr-22948	116	18	tailored	tailor	VERB
ihlr-22948	116	19	to	to	PART
ihlr-22948	116	20	patient	patient	VERB
ihlr-22948	116	21	care.17	care.17	ADJ
ihlr-22948	116	22	registries	registry	NOUN
ihlr-22948	116	23	of	of	ADP
ihlr-22948	116	24	patients	patient	NOUN
ihlr-22948	116	25	with	with	ADP
ihlr-22948	116	26	the	the	DET
ihlr-22948	116	27	condition	condition	NOUN
ihlr-22948	116	28	at	at	ADP
ihlr-22948	116	29	issue	issue	NOUN
ihlr-22948	116	30	can	can	AUX
ihlr-22948	116	31	provide	provide	VERB
ihlr-22948	116	32	continuing	continue	VERB
ihlr-22948	116	33	updated	update	VERB
ihlr-22948	116	34	feedback	feedback	NOUN
ihlr-22948	116	35	about	about	ADP
ihlr-22948	116	36	outcomes	outcome	NOUN
ihlr-22948	116	37	of	of	ADP
ihlr-22948	116	38	similar	similar	ADJ
ihlr-22948	116	39	patients	patient	NOUN
ihlr-22948	116	40	,	,	PUNCT
ihlr-22948	116	41	and	and	CCONJ
ihlr-22948	116	42	thus	thus	ADV
ihlr-22948	116	43	assist	assist	VERB
ihlr-22948	116	44	in	in	ADP
ihlr-22948	116	45	evidence	evidence	NOUN
ihlr-22948	116	46	-	-	PUNCT
ihlr-22948	116	47	based	base	VERB
ihlr-22948	116	48	treatment	treatment	NOUN
ihlr-22948	116	49	recommendations	recommendation	NOUN
ihlr-22948	116	50	for	for	ADP
ihlr-22948	116	51	particular	particular	ADJ
ihlr-22948	116	52	patients	patient	NOUN
ihlr-22948	116	53	.	.	PUNCT
ihlr-22948	117	1	for	for	ADP
ihlr-22948	117	2	example	example	NOUN
ihlr-22948	117	3	,	,	PUNCT
ihlr-22948	117	4	there	there	PRON
ihlr-22948	117	5	is	be	VERB
ihlr-22948	117	6	now	now	ADV
ihlr-22948	117	7	a	a	DET
ihlr-22948	117	8	collaborative	collaborative	ADJ
ihlr-22948	117	9	health	health	NOUN
ihlr-22948	117	10	outcomes	outcome	NOUN
ihlr-22948	117	11	information	information	NOUN
ihlr-22948	117	12	registry	registry	NOUN
ihlr-22948	117	13	that	that	PRON
ihlr-22948	117	14	integrates	integrate	VERB
ihlr-22948	117	15	patient	patient	ADJ
ihlr-22948	117	16	data	datum	NOUN
ihlr-22948	117	17	into	into	ADP
ihlr-22948	117	18	an	an	DET
ihlr-22948	117	19	open	open	ADJ
ihlr-22948	117	20	source	source	NOUN
ihlr-22948	117	21	platform	platform	NOUN
ihlr-22948	117	22	to	to	PART
ihlr-22948	117	23	enable	enable	VERB
ihlr-22948	117	24	physicians	physician	NOUN
ihlr-22948	117	25	to	to	PART
ihlr-22948	117	26	tailor	tailor	VERB
ihlr-22948	117	27	care	care	NOUN
ihlr-22948	117	28	to	to	ADP
ihlr-22948	117	29	their	their	PRON
ihlr-22948	117	30	patients	patient	NOUN
ihlr-22948	117	31	needing	need	VERB
ihlr-22948	117	32	pain	pain	NOUN
ihlr-22948	117	33	management.18	management.18	PROPN
ihlr-22948	117	34	a	a	DET
ihlr-22948	117	35	parallel	parallel	ADJ
ihlr-22948	117	36	registry	registry	NOUN
ihlr-22948	117	37	has	have	AUX
ihlr-22948	117	38	been	be	AUX
ihlr-22948	117	39	established	establish	VERB
ihlr-22948	117	40	for	for	ADP
ihlr-22948	117	41	pediatric	pediatric	ADJ
ihlr-22948	117	42	patients.19	patients.19	NOUN
ihlr-22948	117	43	clinical	clinical	ADJ
ihlr-22948	117	44	research	research	NOUN
ihlr-22948	117	45	is	be	AUX
ihlr-22948	117	46	another	another	DET
ihlr-22948	117	47	area	area	NOUN
ihlr-22948	117	48	for	for	ADP
ihlr-22948	117	49	registry	registry	NOUN
ihlr-22948	117	50	development	development	NOUN
ihlr-22948	117	51	.	.	PUNCT
ihlr-22948	118	1	there	there	PRON
ihlr-22948	118	2	are	be	VERB
ihlr-22948	118	3	national	national	ADJ
ihlr-22948	118	4	and	and	CCONJ
ihlr-22948	118	5	international	international	ADJ
ihlr-22948	118	6	requirements	requirement	NOUN
ihlr-22948	118	7	for	for	ADP
ihlr-22948	118	8	certain	certain	ADJ
ihlr-22948	118	9	clinical	clinical	ADJ
ihlr-22948	118	10	trials	trial	NOUN
ihlr-22948	118	11	to	to	PART
ihlr-22948	118	12	be	be	AUX
ihlr-22948	118	13	listed	list	VERB
ihlr-22948	118	14	in	in	ADP
ihlr-22948	118	15	public	public	ADJ
ihlr-22948	118	16	registries	registry	NOUN
ihlr-22948	118	17	so	so	SCONJ
ihlr-22948	118	18	that	that	SCONJ
ihlr-22948	118	19	the	the	DET
ihlr-22948	118	20	public	public	NOUN
ihlr-22948	118	21	can	can	AUX
ihlr-22948	118	22	acquire	acquire	VERB
ihlr-22948	118	23	summary	summary	NOUN
ihlr-22948	118	24	information	information	NOUN
ihlr-22948	118	25	about	about	ADP
ihlr-22948	118	26	the	the	DET
ihlr-22948	118	27	trial	trial	NOUN
ihlr-22948	118	28	,	,	PUNCT
ihlr-22948	118	29	such	such	ADJ
ihlr-22948	118	30	as	as	ADP
ihlr-22948	118	31	its	its	PRON
ihlr-22948	118	32	sponsor	sponsor	NOUN
ihlr-22948	118	33	,	,	PUNCT
ihlr-22948	118	34	recruitment	recruitment	NOUN
ihlr-22948	118	35	locations	location	NOUN
ihlr-22948	118	36	,	,	PUNCT
ihlr-22948	118	37	inclusion	inclusion	NOUN
ihlr-22948	118	38	criteria	criterion	NOUN
ihlr-22948	118	39	,	,	PUNCT
ihlr-22948	118	40	and	and	CCONJ
ihlr-22948	118	41	outcomes.20	outcomes.20	NOUN
ihlr-22948	118	42	particular	particular	ADJ
ihlr-22948	118	43	clinical	clinical	ADJ
ihlr-22948	118	44	trials	trial	NOUN
ihlr-22948	118	45	may	may	AUX
ihlr-22948	118	46	also	also	ADV
ihlr-22948	118	47	create	create	VERB
ihlr-22948	118	48	patient	patient	ADJ
ihlr-22948	118	49	registries	registry	NOUN
ihlr-22948	118	50	that	that	PRON
ihlr-22948	118	51	are	be	AUX
ihlr-22948	118	52	maintained	maintain	VERB
ihlr-22948	118	53	during	during	ADP
ihlr-22948	118	54	the	the	DET
ihlr-22948	118	55	period	period	NOUN
ihlr-22948	118	56	of	of	ADP
ihlr-22948	118	57	the	the	DET
ihlr-22948	118	58	trial	trial	NOUN
ihlr-22948	118	59	.	.	PUNCT
ihlr-22948	119	1	for	for	ADP
ihlr-22948	119	2	example	example	NOUN
ihlr-22948	119	3	,	,	PUNCT
ihlr-22948	119	4	patients	patient	NOUN
ihlr-22948	119	5	with	with	ADP
ihlr-22948	119	6	intracranial	intracranial	ADJ
ihlr-22948	119	7	arterial	arterial	ADJ
ihlr-22948	119	8	stenosis	stenosis	NOUN
ihlr-22948	119	9	and	and	CCONJ
ihlr-22948	119	10	a	a	DET
ihlr-22948	119	11	high	high	ADJ
ihlr-22948	119	12	risk	risk	NOUN
ihlr-22948	119	13	of	of	ADP
ihlr-22948	119	14	stroke	stroke	NOUN
ihlr-22948	119	15	were	be	AUX
ihlr-22948	119	16	entered	enter	VERB
ihlr-22948	119	17	into	into	ADP
ihlr-22948	119	18	a	a	DET
ihlr-22948	119	19	registry	registry	NOUN
ihlr-22948	119	20	designed	design	VERB
ihlr-22948	119	21	to	to	PART
ihlr-22948	119	22	evaluate	evaluate	VERB
ihlr-22948	119	23	the	the	DET
ihlr-22948	119	24	technical	technical	ADJ
ihlr-22948	119	25	success	success	NOUN
ihlr-22948	119	26	of	of	ADP
ihlr-22948	119	27	stenting	stente	VERB
ihlr-22948	119	28	with	with	ADP
ihlr-22948	119	29	a	a	DET
ihlr-22948	119	30	particular	particular	ADJ
ihlr-22948	119	31	stent	stent	NOUN
ihlr-22948	119	32	device.21	device.21	PROPN
ihlr-22948	119	33	this	this	DET
ihlr-22948	119	34	registry	registry	NOUN
ihlr-22948	119	35	followed	follow	VERB
ihlr-22948	119	36	patients	patient	NOUN
ihlr-22948	119	37	for	for	ADP
ihlr-22948	119	38	a	a	DET
ihlr-22948	119	39	year	year	NOUN
ihlr-22948	119	40	after	after	ADP
ihlr-22948	119	41	insertion	insertion	NOUN
ihlr-22948	119	42	of	of	ADP
ihlr-22948	119	43	the	the	DET
ihlr-22948	119	44	stent.22	stent.22	NOUN
ihlr-22948	119	45	other	other	ADJ
ihlr-22948	119	46	registries	registry	NOUN
ihlr-22948	119	47	collect	collect	VERB
ihlr-22948	119	48	ongoing	ongoing	ADJ
ihlr-22948	119	49	data	datum	NOUN
ihlr-22948	119	50	about	about	ADP
ihlr-22948	119	51	particular	particular	ADJ
ihlr-22948	119	52	treatments	treatment	NOUN
ihlr-22948	119	53	or	or	CCONJ
ihlr-22948	119	54	medical	medical	ADJ
ihlr-22948	119	55	devices	device	NOUN
ihlr-22948	119	56	.	.	PUNCT
ihlr-22948	120	1	for	for	ADP
ihlr-22948	120	2	example	example	NOUN
ihlr-22948	120	3	,	,	PUNCT
ihlr-22948	120	4	the	the	DET
ihlr-22948	120	5	american	american	PROPN
ihlr-22948	120	6	academy	academy	PROPN
ihlr-22948	120	7	of	of	ADP
ihlr-22948	120	8	orthopedic	orthopedic	ADJ
ihlr-22948	120	9	surgeons	surgeon	NOUN
ihlr-22948	120	10	maintains	maintain	VERB
ihlr-22948	120	11	a	a	DET
ihlr-22948	120	12	registry	registry	NOUN
ihlr-22948	120	13	of	of	ADP
ihlr-22948	120	14	patients	patient	NOUN
ihlr-22948	120	15	who	who	PRON
ihlr-22948	120	16	have	have	AUX
ihlr-22948	120	17	received	receive	VERB
ihlr-22948	120	18	hip	hip	NOUN
ihlr-22948	120	19	or	or	CCONJ
ihlr-22948	120	20	knee	knee	NOUN
ihlr-22948	120	21	replacements	replacement	NOUN
ihlr-22948	120	22	which	which	PRON
ihlr-22948	120	23	included	include	VERB
ihlr-22948	120	24	over	over	ADP
ihlr-22948	120	25	1,414,000	1,414,000	NUM
ihlr-22948	120	26	procedures	procedure	NOUN
ihlr-22948	120	27	by	by	ADP
ihlr-22948	120	28	2018,23	2018,23	PROPN
ihlr-22948	120	29	and	and	CCONJ
ihlr-22948	120	30	the	the	DET
ihlr-22948	120	31	american	american	PROPN
ihlr-22948	120	32	college	college	PROPN
ihlr-22948	120	33	of	of	ADP
ihlr-22948	120	34	cardiology	cardiology	NOUN
ihlr-22948	120	35	maintains	maintain	VERB
ihlr-22948	120	36	a	a	DET
ihlr-22948	120	37	suite	suite	NOUN
ihlr-22948	120	38	of	of	ADP
ihlr-22948	120	39	ten	ten	NUM
ihlr-22948	120	40	registries	registry	NOUN
ihlr-22948	120	41	aimed	aim	VERB
ihlr-22948	120	42	to	to	PART
ihlr-22948	120	43	improve	improve	VERB
ihlr-22948	120	44	the	the	DET
ihlr-22948	120	45	evidence	evidence	NOUN
ihlr-22948	120	46	base	base	NOUN
ihlr-22948	120	47	for	for	ADP
ihlr-22948	120	48	cardiac	cardiac	ADJ
ihlr-22948	120	49	care.24	care.24	VERB
ihlr-22948	120	50	a	a	DET
ihlr-22948	120	51	registry	registry	NOUN
ihlr-22948	120	52	of	of	ADP
ihlr-22948	120	53	all	all	DET
ihlr-22948	120	54	genetic	genetic	ADJ
ihlr-22948	120	55	tests	test	NOUN
ihlr-22948	120	56	maintained	maintain	VERB
ihlr-22948	120	57	by	by	ADP
ihlr-22948	120	58	the	the	DET
ihlr-22948	120	59	national	national	PROPN
ihlr-22948	120	60	institutes	institutes	PROPN
ihlr-22948	120	61	of	of	ADP
ihlr-22948	120	62	16	16	NUM
ihlr-22948	120	63	.	.	PUNCT
ihlr-22948	121	1	i	i	PRON
ihlr-22948	121	2	d.	d.	PROPN
ihlr-22948	121	3	17	17	NUM
ihlr-22948	121	4	.	.	PUNCT
ihlr-22948	122	1	best	good	ADJ
ihlr-22948	122	2	care	care	VERB
ihlr-22948	122	3	at	at	ADP
ihlr-22948	122	4	lower	low	ADJ
ihlr-22948	122	5	cost	cost	NOUN
ihlr-22948	122	6	:	:	PUNCT
ihlr-22948	122	7	the	the	DET
ihlr-22948	122	8	path	path	NOUN
ihlr-22948	122	9	to	to	PART
ihlr-22948	122	10	continuously	continuously	ADV
ihlr-22948	122	11	learning	learn	VERB
ihlr-22948	122	12	health	health	NOUN
ihlr-22948	122	13	care	care	NOUN
ihlr-22948	122	14	in	in	ADP
ihlr-22948	122	15	america	america	PROPN
ihlr-22948	122	16	136	136	NUM
ihlr-22948	122	17	(	(	PUNCT
ihlr-22948	122	18	mark	mark	PROPN
ihlr-22948	122	19	smith	smith	PROPN
ihlr-22948	122	20	et	et	PROPN
ihlr-22948	122	21	al	al	PROPN
ihlr-22948	122	22	.	.	PUNCT
ihlr-22948	123	1	eds	eds	PROPN
ihlr-22948	123	2	.	.	PROPN
ihlr-22948	123	3	2013	2013	NUM
ihlr-22948	123	4	)	)	PUNCT
ihlr-22948	123	5	,	,	PUNCT
ihlr-22948	123	6	https://www.nap.edu/read/13444/chapter/1#xvii	https://www.nap.edu/read/13444/chapter/1#xvii	PROPN
ihlr-22948	124	1	[	[	X
ihlr-22948	124	2	https://perma.cc/j4js-rmy6	https://perma.cc/j4js-rmy6	ADP
ihlr-22948	124	3	]	]	X
ihlr-22948	124	4	.	.	PUNCT
ihlr-22948	124	5	18	18	NUM
ihlr-22948	124	6	.	.	PUNCT
ihlr-22948	124	7	clinical	clinical	ADJ
ihlr-22948	124	8	,	,	PUNCT
ihlr-22948	124	9	collaborative	collaborative	ADJ
ihlr-22948	124	10	health	health	NOUN
ihlr-22948	124	11	outcomes	outcome	NOUN
ihlr-22948	124	12	info	info	NOUN
ihlr-22948	124	13	.	.	PUNCT
ihlr-22948	125	1	registry	registry	NOUN
ihlr-22948	125	2	,	,	PUNCT
ihlr-22948	125	3	https://choir.stanford	https://choir.stanford	PROPN
ihlr-22948	125	4	.	.	PUNCT
ihlr-22948	126	1	edu	edu	PROPN
ihlr-22948	126	2	/	/	SYM
ihlr-22948	126	3	clinical	clinical	NOUN
ihlr-22948	126	4	-	-	PUNCT
ihlr-22948	126	5	practice/	practice/	NOUN
ihlr-22948	126	6	[	[	X
ihlr-22948	126	7	https://perma.cc/2qjd-854k	https://perma.cc/2qjd-854k	VERB
ihlr-22948	126	8	]	]	X
ihlr-22948	126	9	.	.	PUNCT
ihlr-22948	127	1	19	19	NUM
ihlr-22948	127	2	.	.	PUNCT
ihlr-22948	128	1	rashmi	rashmi	PROPN
ihlr-22948	128	2	p.	p.	PROPN
ihlr-22948	128	3	bhandari	bhandari	PROPN
ihlr-22948	128	4	et	et	PROPN
ihlr-22948	128	5	al	al	PROPN
ihlr-22948	128	6	.	.	PROPN
ihlr-22948	128	7	,	,	PUNCT
ihlr-22948	128	8	pediatric	pediatric	ADJ
ihlr-22948	128	9	-	-	PUNCT
ihlr-22948	128	10	collaborative	collaborative	NOUN
ihlr-22948	128	11	health	health	NOUN
ihlr-22948	128	12	outcomes	outcome	NOUN
ihlr-22948	128	13	information	information	NOUN
ihlr-22948	128	14	registry	registry	NOUN
ihlr-22948	128	15	(	(	PUNCT
ihlr-22948	128	16	peds	ped	NOUN
ihlr-22948	128	17	-	-	PUNCT
ihlr-22948	128	18	choir	choir	NOUN
ihlr-22948	128	19	):	):	PUNCT
ihlr-22948	128	20	a	a	DET
ihlr-22948	128	21	learning	learn	VERB
ihlr-22948	128	22	health	health	NOUN
ihlr-22948	128	23	system	system	NOUN
ihlr-22948	128	24	to	to	PART
ihlr-22948	128	25	guide	guide	VERB
ihlr-22948	128	26	pediatric	pediatric	ADJ
ihlr-22948	128	27	pain	pain	NOUN
ihlr-22948	128	28	research	research	NOUN
ihlr-22948	128	29	and	and	CCONJ
ihlr-22948	128	30	treatment	treatment	NOUN
ihlr-22948	128	31	,	,	PUNCT
ihlr-22948	128	32	(	(	PUNCT
ihlr-22948	128	33	sept	sept	PROPN
ihlr-22948	128	34	.	.	PROPN
ihlr-22948	128	35	1	1	NUM
ihlr-22948	128	36	,	,	PUNCT
ihlr-22948	128	37	2017	2017	NUM
ihlr-22948	128	38	)	)	PUNCT
ihlr-22948	128	39	(	(	PUNCT
ihlr-22948	128	40	unpublished	unpublished	ADJ
ihlr-22948	128	41	manuscript	manuscript	NOUN
ihlr-22948	128	42	)	)	PUNCT
ihlr-22948	128	43	https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4988911/	https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4988911/	NOUN
ihlr-22948	129	1	[	[	X
ihlr-22948	129	2	https://perma.cc/c6sb-xsnf	https://perma.cc/c6sb-xsnf	X
ihlr-22948	129	3	]	]	X
ihlr-22948	129	4	.	.	PUNCT
ihlr-22948	130	1	20	20	NUM
ihlr-22948	130	2	.	.	X
ihlr-22948	130	3	listing	list	VERB
ihlr-22948	130	4	of	of	ADP
ihlr-22948	130	5	clinical	clinical	ADJ
ihlr-22948	130	6	trial	trial	NOUN
ihlr-22948	130	7	registries	registry	NOUN
ihlr-22948	130	8	,	,	PUNCT
ihlr-22948	130	9	supra	supra	PROPN
ihlr-22948	130	10	note	note	NOUN
ihlr-22948	130	11	5	5	NUM
ihlr-22948	130	12	.	.	SYM
ihlr-22948	130	13	21	21	NUM
ihlr-22948	130	14	.	.	PUNCT
ihlr-22948	131	1	o.o	o.o	PROPN
ihlr-22948	131	2	.	.	PROPN
ihlr-22948	131	3	zaidat	zaidat	PROPN
ihlr-22948	131	4	et	et	PROPN
ihlr-22948	131	5	al	al	PROPN
ihlr-22948	131	6	.	.	PROPN
ihlr-22948	131	7	,	,	PUNCT
ihlr-22948	131	8	the	the	DET
ihlr-22948	131	9	nih	nih	PROPN
ihlr-22948	131	10	registry	registry	PROPN
ihlr-22948	131	11	on	on	ADP
ihlr-22948	131	12	use	use	NOUN
ihlr-22948	131	13	of	of	ADP
ihlr-22948	131	14	the	the	DET
ihlr-22948	131	15	wingspan	wingspan	NOUN
ihlr-22948	131	16	stent	stent	NOUN
ihlr-22948	131	17	for	for	ADP
ihlr-22948	131	18	symptomatic	symptomatic	ADJ
ihlr-22948	131	19	70–99	70–99	NUM
ihlr-22948	131	20	%	%	NOUN
ihlr-22948	131	21	intracranial	intracranial	ADJ
ihlr-22948	131	22	arterial	arterial	NOUN
ihlr-22948	131	23	stenosis	stenosis	NOUN
ihlr-22948	131	24	(	(	PUNCT
ihlr-22948	131	25	nov	nov	PROPN
ihlr-22948	131	26	.	.	PROPN
ihlr-22948	131	27	26	26	NUM
ihlr-22948	131	28	,	,	PUNCT
ihlr-22948	131	29	2012	2012	NUM
ihlr-22948	131	30	)	)	PUNCT
ihlr-22948	131	31	(	(	PUNCT
ihlr-22948	131	32	author	author	NOUN
ihlr-22948	131	33	manuscript	manuscript	PROPN
ihlr-22948	131	34	)	)	PUNCT
ihlr-22948	131	35	,	,	PUNCT
ihlr-22948	131	36	https://www.ncbi	https://www.ncbi	PROPN
ihlr-22948	131	37	.	.	PUNCT
ihlr-22948	132	1	nlm.nih.gov/pmc/articles/pmc3506389/	nlm.nih.gov/pmc/articles/pmc3506389/	NOUN
ihlr-22948	132	2	[	[	X
ihlr-22948	132	3	https://perma.cc/8mtb-s63d	https://perma.cc/8mtb-s63d	X
ihlr-22948	132	4	]	]	X
ihlr-22948	132	5	.	.	PUNCT
ihlr-22948	133	1	22	22	NUM
ihlr-22948	133	2	.	.	PUNCT
ihlr-22948	134	1	david	david	PROPN
ihlr-22948	134	2	j.	j.	PROPN
ihlr-22948	134	3	fiorella	fiorella	PROPN
ihlr-22948	134	4	et	et	PROPN
ihlr-22948	134	5	al	al	PROPN
ihlr-22948	134	6	.	.	PROPN
ihlr-22948	134	7	,	,	PUNCT
ihlr-22948	134	8	us	us	PROPN
ihlr-22948	134	9	wingspan	wingspan	NOUN
ihlr-22948	134	10	registry	registry	NOUN
ihlr-22948	134	11	12	12	NUM
ihlr-22948	134	12	-	-	PUNCT
ihlr-22948	134	13	month	month	NOUN
ihlr-22948	134	14	follow	follow	NOUN
ihlr-22948	134	15	-	-	PUNCT
ihlr-22948	134	16	up	up	ADP
ihlr-22948	134	17	results	result	NOUN
ihlr-22948	134	18	,	,	PUNCT
ihlr-22948	134	19	42	42	NUM
ihlr-22948	134	20	stroke	stroke	NOUN
ihlr-22948	134	21	1976	1976	NUM
ihlr-22948	134	22	(	(	PUNCT
ihlr-22948	134	23	2011	2011	NUM
ihlr-22948	134	24	)	)	PUNCT
ihlr-22948	134	25	.	.	PUNCT
ihlr-22948	135	1	23	23	NUM
ihlr-22948	135	2	.	.	PUNCT
ihlr-22948	136	1	a	a	DET
ihlr-22948	136	2	growing	grow	VERB
ihlr-22948	136	3	network	network	NOUN
ihlr-22948	136	4	,	,	PUNCT
ihlr-22948	136	5	am	be	AUX
ihlr-22948	136	6	.	.	PUNCT
ihlr-22948	137	1	acad.orthopedic	acad.orthopedic	ADJ
ihlr-22948	137	2	surgeons	surgeon	NOUN
ihlr-22948	137	3	,	,	PUNCT
ihlr-22948	137	4	am	be	AUX
ihlr-22948	137	5	.	.	PUNCT
ihlr-22948	138	1	joint	joint	ADJ
ihlr-22948	138	2	replacement	replacement	NOUN
ihlr-22948	138	3	registry	registry	NOUN
ihlr-22948	138	4	,	,	PUNCT
ihlr-22948	138	5	http://www.ajrr.net/	http://www.ajrr.net/	X
ihlr-22948	138	6	[	[	X
ihlr-22948	138	7	https://perma.cc/uq8y-ck46	https://perma.cc/uq8y-ck46	X
ihlr-22948	138	8	]	]	X
ihlr-22948	138	9	.	.	PUNCT
ihlr-22948	139	1	24	24	NUM
ihlr-22948	139	2	.	.	PUNCT
ihlr-22948	139	3	registries	registry	NOUN
ihlr-22948	139	4	,	,	PUNCT
ihlr-22948	139	5	am	be	AUX
ihlr-22948	139	6	.	.	PUNCT
ihlr-22948	140	1	college	college	NOUN
ihlr-22948	140	2	of	of	ADP
ihlr-22948	140	3	cardiology	cardiology	NOUN
ihlr-22948	140	4	,	,	PUNCT
ihlr-22948	140	5	https://cvquality.acc.org/ncdr-home/	https://cvquality.acc.org/ncdr-home/	PROPN
ihlr-22948	140	6	2018	2018	NUM
ihlr-22948	140	7	]	]	PUNCT
ihlr-22948	140	8	patient	patient	ADJ
ihlr-22948	140	9	registries	registry	NOUN
ihlr-22948	140	10	and	and	CCONJ
ihlr-22948	140	11	their	their	PRON
ihlr-22948	140	12	governance	governance	NOUN
ihlr-22948	140	13	49	49	NUM
ihlr-22948	140	14	health	health	NOUN
ihlr-22948	140	15	collects	collect	VERB
ihlr-22948	140	16	information	information	NOUN
ihlr-22948	140	17	submitted	submit	VERB
ihlr-22948	140	18	by	by	ADP
ihlr-22948	140	19	test	test	NOUN
ihlr-22948	140	20	providers	provider	NOUN
ihlr-22948	140	21	about	about	ADP
ihlr-22948	140	22	what	what	PRON
ihlr-22948	140	23	the	the	DET
ihlr-22948	140	24	test	test	NOUN
ihlr-22948	140	25	measures	measure	NOUN
ihlr-22948	140	26	,	,	PUNCT
ihlr-22948	140	27	where	where	SCONJ
ihlr-22948	140	28	it	it	PRON
ihlr-22948	140	29	can	can	AUX
ihlr-22948	140	30	be	be	AUX
ihlr-22948	140	31	administered	administer	VERB
ihlr-22948	140	32	,	,	PUNCT
ihlr-22948	140	33	and	and	CCONJ
ihlr-22948	140	34	any	any	DET
ihlr-22948	140	35	evidence	evidence	NOUN
ihlr-22948	140	36	of	of	ADP
ihlr-22948	140	37	its	its	PRON
ihlr-22948	140	38	analytical	analytical	ADJ
ihlr-22948	140	39	and	and	CCONJ
ihlr-22948	140	40	clinical	clinical	ADJ
ihlr-22948	140	41	validity	validity	NOUN
ihlr-22948	140	42	and	and	CCONJ
ihlr-22948	140	43	clinical	clinical	ADJ
ihlr-22948	140	44	utility	utility	NOUN
ihlr-22948	140	45	but	but	CCONJ
ihlr-22948	140	46	does	do	AUX
ihlr-22948	140	47	not	not	PART
ihlr-22948	140	48	acquire	acquire	VERB
ihlr-22948	140	49	information	information	NOUN
ihlr-22948	140	50	about	about	ADP
ihlr-22948	140	51	individual	individual	ADJ
ihlr-22948	140	52	patient	patient	ADJ
ihlr-22948	140	53	test	test	NOUN
ihlr-22948	140	54	results.25	results.25	NOUN
ihlr-22948	140	55	still	still	ADV
ihlr-22948	140	56	other	other	ADJ
ihlr-22948	140	57	registries	registry	NOUN
ihlr-22948	140	58	are	be	AUX
ihlr-22948	140	59	designed	design	VERB
ihlr-22948	140	60	for	for	ADP
ihlr-22948	140	61	public	public	ADJ
ihlr-22948	140	62	health	health	NOUN
ihlr-22948	140	63	purposes	purpose	NOUN
ihlr-22948	140	64	to	to	PART
ihlr-22948	140	65	assess	assess	VERB
ihlr-22948	140	66	the	the	DET
ihlr-22948	140	67	incidence	incidence	NOUN
ihlr-22948	140	68	and	and	CCONJ
ihlr-22948	140	69	prevalence	prevalence	NOUN
ihlr-22948	140	70	of	of	ADP
ihlr-22948	140	71	selected	select	VERB
ihlr-22948	140	72	conditions	condition	NOUN
ihlr-22948	140	73	.	.	PUNCT
ihlr-22948	141	1	for	for	ADP
ihlr-22948	141	2	example	example	NOUN
ihlr-22948	141	3	,	,	PUNCT
ihlr-22948	141	4	forty	forty	NUM
ihlr-22948	141	5	-	-	PUNCT
ihlr-22948	141	6	six	six	NUM
ihlr-22948	141	7	states	state	NOUN
ihlr-22948	141	8	and	and	CCONJ
ihlr-22948	141	9	the	the	DET
ihlr-22948	141	10	district	district	NOUN
ihlr-22948	141	11	of	of	ADP
ihlr-22948	141	12	columbia	columbia	PROPN
ihlr-22948	141	13	receive	receive	VERB
ihlr-22948	141	14	funding	funding	NOUN
ihlr-22948	141	15	from	from	ADP
ihlr-22948	141	16	the	the	DET
ihlr-22948	141	17	u.s	u.s	PROPN
ihlr-22948	141	18	.	.	PROPN
ihlr-22948	141	19	centers	center	NOUN
ihlr-22948	141	20	for	for	ADP
ihlr-22948	141	21	disease	disease	NOUN
ihlr-22948	141	22	control	control	NOUN
ihlr-22948	141	23	and	and	CCONJ
ihlr-22948	141	24	prevention	prevention	NOUN
ihlr-22948	141	25	(	(	PUNCT
ihlr-22948	141	26	“	"	PUNCT
ihlr-22948	141	27	cdc	cdc	PROPN
ihlr-22948	141	28	”	"	PUNCT
ihlr-22948	141	29	)	)	PUNCT
ihlr-22948	141	30	to	to	PART
ihlr-22948	141	31	maintain	maintain	VERB
ihlr-22948	141	32	state	state	NOUN
ihlr-22948	141	33	cancer	cancer	NOUN
ihlr-22948	141	34	registries	registry	NOUN
ihlr-22948	141	35	that	that	PRON
ihlr-22948	141	36	collect	collect	VERB
ihlr-22948	141	37	incidence	incidence	NOUN
ihlr-22948	141	38	and	and	CCONJ
ihlr-22948	141	39	mortality	mortality	NOUN
ihlr-22948	141	40	data.26	data.26	ADJ
ihlr-22948	141	41	these	these	DET
ihlr-22948	141	42	registries	registry	NOUN
ihlr-22948	141	43	may	may	AUX
ihlr-22948	141	44	be	be	AUX
ihlr-22948	141	45	used	use	VERB
ihlr-22948	141	46	to	to	PART
ihlr-22948	141	47	identify	identify	VERB
ihlr-22948	141	48	high	high	ADJ
ihlr-22948	141	49	-	-	PUNCT
ihlr-22948	141	50	risk	risk	NOUN
ihlr-22948	141	51	groups	group	NOUN
ihlr-22948	141	52	of	of	ADP
ihlr-22948	141	53	patients	patient	NOUN
ihlr-22948	141	54	or	or	CCONJ
ihlr-22948	141	55	to	to	PART
ihlr-22948	141	56	investigate	investigate	VERB
ihlr-22948	141	57	the	the	DET
ihlr-22948	141	58	possibility	possibility	NOUN
ihlr-22948	141	59	that	that	SCONJ
ihlr-22948	141	60	there	there	PRON
ihlr-22948	141	61	are	be	VERB
ihlr-22948	141	62	cancer	cancer	NOUN
ihlr-22948	141	63	clusters	cluster	NOUN
ihlr-22948	141	64	with	with	ADP
ihlr-22948	141	65	environmental	environmental	ADJ
ihlr-22948	141	66	causes.27	causes.27	PROPN
ihlr-22948	141	67	to	to	PART
ihlr-22948	141	68	take	take	VERB
ihlr-22948	141	69	another	another	DET
ihlr-22948	141	70	example	example	NOUN
ihlr-22948	141	71	,	,	PUNCT
ihlr-22948	141	72	forty	forty	NUM
ihlr-22948	141	73	-	-	PUNCT
ihlr-22948	141	74	three	three	NUM
ihlr-22948	141	75	states	state	NOUN
ihlr-22948	141	76	have	have	VERB
ihlr-22948	141	77	birth	birth	NOUN
ihlr-22948	141	78	defect	defect	VERB
ihlr-22948	141	79	tracking	tracking	NOUN
ihlr-22948	141	80	systems	system	NOUN
ihlr-22948	141	81	that	that	PRON
ihlr-22948	141	82	collect	collect	VERB
ihlr-22948	141	83	information	information	NOUN
ihlr-22948	141	84	about	about	ADP
ihlr-22948	141	85	the	the	DET
ihlr-22948	141	86	incidence	incidence	NOUN
ihlr-22948	141	87	of	of	ADP
ihlr-22948	141	88	defects	defect	NOUN
ihlr-22948	141	89	and	and	CCONJ
ihlr-22948	141	90	use	use	VERB
ihlr-22948	141	91	the	the	DET
ihlr-22948	141	92	data	datum	NOUN
ihlr-22948	141	93	for	for	ADP
ihlr-22948	141	94	prevention	prevention	NOUN
ihlr-22948	141	95	,	,	PUNCT
ihlr-22948	141	96	referral	referral	NOUN
ihlr-22948	141	97	,	,	PUNCT
ihlr-22948	141	98	and	and	CCONJ
ihlr-22948	141	99	early	early	ADJ
ihlr-22948	141	100	intervention	intervention	NOUN
ihlr-22948	141	101	treatment	treatment	NOUN
ihlr-22948	141	102	for	for	ADP
ihlr-22948	141	103	patients.28	patients.28	NOUN
ihlr-22948	141	104	2	2	NUM
ihlr-22948	141	105	.	.	PUNCT
ihlr-22948	142	1	entities	entity	NOUN
ihlr-22948	142	2	maintaining	maintain	VERB
ihlr-22948	142	3	registries	registry	NOUN
ihlr-22948	142	4	the	the	DET
ihlr-22948	142	5	entities	entity	NOUN
ihlr-22948	142	6	maintaining	maintain	VERB
ihlr-22948	142	7	registries	registry	NOUN
ihlr-22948	142	8	are	be	AUX
ihlr-22948	142	9	as	as	ADV
ihlr-22948	142	10	diverse	diverse	ADJ
ihlr-22948	142	11	as	as	ADP
ihlr-22948	142	12	the	the	DET
ihlr-22948	142	13	registries	registry	NOUN
ihlr-22948	142	14	themselves	themselves	PRON
ihlr-22948	142	15	.	.	PUNCT
ihlr-22948	143	1	some	some	DET
ihlr-22948	143	2	registries	registry	NOUN
ihlr-22948	143	3	are	be	AUX
ihlr-22948	143	4	maintained	maintain	VERB
ihlr-22948	143	5	by	by	ADP
ihlr-22948	143	6	federal	federal	ADJ
ihlr-22948	143	7	or	or	CCONJ
ihlr-22948	143	8	state	state	NOUN
ihlr-22948	143	9	public	public	ADJ
ihlr-22948	143	10	health	health	NOUN
ihlr-22948	143	11	authorities	authority	NOUN
ihlr-22948	143	12	.	.	PUNCT
ihlr-22948	144	1	to	to	PART
ihlr-22948	144	2	illustrate	illustrate	VERB
ihlr-22948	144	3	with	with	ADP
ihlr-22948	144	4	one	one	NUM
ihlr-22948	144	5	state	state	NOUN
ihlr-22948	144	6	,	,	PUNCT
ihlr-22948	144	7	utah	utah	PROPN
ihlr-22948	144	8	maintains	maintain	VERB
ihlr-22948	144	9	a	a	DET
ihlr-22948	144	10	cancer	cancer	NOUN
ihlr-22948	144	11	registry,29	registry,29	NOUN
ihlr-22948	144	12	a	a	DET
ihlr-22948	144	13	trauma	trauma	NOUN
ihlr-22948	144	14	registry,30	registry,30	VERB
ihlr-22948	144	15	an	an	DET
ihlr-22948	144	16	immunization	immunization	NOUN
ihlr-22948	144	17	information	information	NOUN
ihlr-22948	144	18	system,31	system,31	NOUN
ihlr-22948	144	19	and	and	CCONJ
ihlr-22948	144	20	a	a	DET
ihlr-22948	144	21	birth	birth	NOUN
ihlr-22948	144	22	defect	defect	NOUN
ihlr-22948	144	23	network.32	network.32	NOUN
ihlr-22948	144	24	in	in	ADP
ihlr-22948	144	25	addition	addition	NOUN
ihlr-22948	144	26	,	,	PUNCT
ihlr-22948	144	27	utah	utah	PROPN
ihlr-22948	144	28	established	establish	VERB
ihlr-22948	144	29	a	a	DET
ihlr-22948	144	30	stroke	stroke	NOUN
ihlr-22948	144	31	and	and	CCONJ
ihlr-22948	144	32	cardiac	cardiac	ADJ
ihlr-22948	144	33	registry	registry	NOUN
ihlr-22948	144	34	by	by	ADP
ihlr-22948	144	35	statute	statute	NOUN
ihlr-22948	144	36	in	in	ADP
ihlr-22948	144	37	2018.33	2018.33	NUM
ihlr-22948	144	38	other	other	ADJ
ihlr-22948	144	39	registries	registry	NOUN
ihlr-22948	144	40	are	be	AUX
ihlr-22948	144	41	maintained	maintain	VERB
ihlr-22948	144	42	by	by	ADP
ihlr-22948	144	43	non	non	ADJ
ihlr-22948	144	44	-	-	ADJ
ihlr-22948	144	45	profit	profit	ADJ
ihlr-22948	144	46	organizations	organization	NOUN
ihlr-22948	144	47	devoted	devote	VERB
ihlr-22948	144	48	to	to	ADP
ihlr-22948	144	49	particular	particular	ADJ
ihlr-22948	144	50	diseases	disease	NOUN
ihlr-22948	144	51	.	.	PUNCT
ihlr-22948	145	1	the	the	DET
ihlr-22948	145	2	patient	patient	ADJ
ihlr-22948	145	3	registry	registry	NOUN
ihlr-22948	145	4	maintained	maintain	VERB
ihlr-22948	145	5	by	by	ADP
ihlr-22948	145	6	the	the	DET
ihlr-22948	145	7	cystic	cystic	ADJ
ihlr-22948	145	8	fibrosis	fibrosis	NOUN
ihlr-22948	145	9	registries	registry	NOUN
ihlr-22948	145	10	[	[	X
ihlr-22948	145	11	https://perma.cc/clr7-qc8x	https://perma.cc/clr7-qc8x	X
ihlr-22948	145	12	]	]	X
ihlr-22948	145	13	.	.	PUNCT
ihlr-22948	146	1	25	25	NUM
ihlr-22948	146	2	.	.	PUNCT
ihlr-22948	147	1	rubinstein	rubinstein	PROPN
ihlr-22948	147	2	et	et	PROPN
ihlr-22948	147	3	al	al	PROPN
ihlr-22948	147	4	.	.	PROPN
ihlr-22948	147	5	,	,	PUNCT
ihlr-22948	147	6	supra	supra	PROPN
ihlr-22948	147	7	note	note	NOUN
ihlr-22948	147	8	5	5	NUM
ihlr-22948	147	9	.	.	PUNCT
ihlr-22948	148	1	although	although	SCONJ
ihlr-22948	148	2	this	this	PRON
ihlr-22948	148	3	is	be	AUX
ihlr-22948	148	4	called	call	VERB
ihlr-22948	148	5	a	a	DET
ihlr-22948	148	6	registry	registry	NOUN
ihlr-22948	148	7	,	,	PUNCT
ihlr-22948	148	8	it	it	PRON
ihlr-22948	148	9	is	be	AUX
ihlr-22948	148	10	not	not	PART
ihlr-22948	148	11	one	one	NUM
ihlr-22948	148	12	in	in	ADP
ihlr-22948	148	13	the	the	DET
ihlr-22948	148	14	more	more	ADV
ihlr-22948	148	15	standard	standard	ADJ
ihlr-22948	148	16	sense	sense	NOUN
ihlr-22948	148	17	that	that	SCONJ
ihlr-22948	148	18	it	it	PRON
ihlr-22948	148	19	collects	collect	VERB
ihlr-22948	148	20	data	datum	NOUN
ihlr-22948	148	21	about	about	ADP
ihlr-22948	148	22	individual	individual	ADJ
ihlr-22948	148	23	patient	patient	NOUN
ihlr-22948	148	24	.	.	PUNCT
ihlr-22948	149	1	26	26	NUM
ihlr-22948	149	2	.	.	PUNCT
ihlr-22948	149	3	national	national	ADJ
ihlr-22948	149	4	program	program	NOUN
ihlr-22948	149	5	of	of	ADP
ihlr-22948	149	6	cancer	cancer	NOUN
ihlr-22948	149	7	registries	registry	NOUN
ihlr-22948	149	8	,	,	PUNCT
ihlr-22948	149	9	ctrs	ctrs	PROPN
ihlr-22948	149	10	.	.	PUNCT
ihlr-22948	150	1	disease	disease	PROPN
ihlr-22948	150	2	control	control	NOUN
ihlr-22948	150	3	,	,	PUNCT
ihlr-22948	150	4	https://www.cdc.gov/	https://www.cdc.gov/	ADJ
ihlr-22948	150	5	cancer	cancer	NOUN
ihlr-22948	150	6	/	/	SYM
ihlr-22948	150	7	npcr	npcr	ADJ
ihlr-22948	150	8	/	/	SYM
ihlr-22948	150	9	index.htm	index.htm	X
ihlr-22948	151	1	[	[	X
ihlr-22948	151	2	https://perm.cc/nvm9-4jth	https://perm.cc/nvm9-4jth	X
ihlr-22948	151	3	]	]	X
ihlr-22948	151	4	(	(	PUNCT
ihlr-22948	151	5	last	last	ADJ
ihlr-22948	151	6	updated	update	VERB
ihlr-22948	151	7	oct	oct	PROPN
ihlr-22948	151	8	.	.	PROPN
ihlr-22948	151	9	25	25	NUM
ihlr-22948	151	10	,	,	PUNCT
ihlr-22948	151	11	2018	2018	NUM
ihlr-22948	151	12	)	)	PUNCT
ihlr-22948	151	13	.	.	PUNCT
ihlr-22948	152	1	27	27	NUM
ihlr-22948	152	2	.	.	PUNCT
ihlr-22948	152	3	national	national	ADJ
ihlr-22948	152	4	program	program	NOUN
ihlr-22948	152	5	of	of	ADP
ihlr-22948	152	6	cancer	cancer	NOUN
ihlr-22948	152	7	registries	registry	NOUN
ihlr-22948	152	8	(	(	PUNCT
ihlr-22948	152	9	ncpr	ncpr	ADJ
ihlr-22948	152	10	)	)	PUNCT
ihlr-22948	152	11	,	,	PUNCT
ihlr-22948	152	12	centers	center	NOUN
ihlr-22948	152	13	for	for	ADP
ihlr-22948	152	14	disease	disease	NOUN
ihlr-22948	152	15	control	control	PROPN
ihlr-22948	152	16	&	&	CCONJ
ihlr-22948	152	17	prevention	prevention	PROPN
ihlr-22948	152	18	(	(	PUNCT
ihlr-22948	152	19	mar	mar	PROPN
ihlr-22948	152	20	.	.	PROPN
ihlr-22948	152	21	27	27	NUM
ihlr-22948	152	22	,	,	PUNCT
ihlr-22948	152	23	2018	2018	NUM
ihlr-22948	152	24	)	)	PUNCT
ihlr-22948	152	25	,	,	PUNCT
ihlr-22948	152	26	https://www.cdc.gov/cancer/npcr/index.htm	https://www.cdc.gov/cancer/npcr/index.htm	PROPN
ihlr-22948	153	1	[	[	X
ihlr-22948	153	2	https://perma.cc/	https://perma.cc/	VERB
ihlr-22948	153	3	2abm	2abm	NUM
ihlr-22948	153	4	-	-	PUNCT
ihlr-22948	153	5	v8m6	v8m6	NOUN
ihlr-22948	153	6	]	]	PUNCT
ihlr-22948	153	7	.	.	PUNCT
ihlr-22948	154	1	28	28	NUM
ihlr-22948	154	2	.	.	PUNCT
ihlr-22948	155	1	state	state	NOUN
ihlr-22948	155	2	-	-	PUNCT
ihlr-22948	155	3	based	base	VERB
ihlr-22948	155	4	tracking	tracking	NOUN
ihlr-22948	155	5	systems	system	NOUN
ihlr-22948	155	6	,	,	PUNCT
ihlr-22948	155	7	centers	center	NOUN
ihlr-22948	155	8	for	for	ADP
ihlr-22948	155	9	disease	disease	NOUN
ihlr-22948	155	10	control	control	PROPN
ihlr-22948	155	11	&	&	CCONJ
ihlr-22948	155	12	prevention	prevention	PROPN
ihlr-22948	155	13	(	(	PUNCT
ihlr-22948	155	14	nov	nov	PROPN
ihlr-22948	155	15	.	.	PROPN
ihlr-22948	155	16	30	30	NUM
ihlr-22948	155	17	,	,	PUNCT
ihlr-22948	155	18	2017	2017	NUM
ihlr-22948	155	19	)	)	PUNCT
ihlr-22948	155	20	,	,	PUNCT
ihlr-22948	155	21	https://www.cdc.gov/ncbddd/birthdefects/states/index.html	https://www.cdc.gov/ncbddd/birthdefects/states/index.html	PROPN
ihlr-22948	156	1	[	[	X
ihlr-22948	156	2	https://perma.cc/d3wb3tut	https://perma.cc/d3wb3tut	PROPN
ihlr-22948	156	3	]	]	PUNCT
ihlr-22948	156	4	.	.	PUNCT
ihlr-22948	157	1	29	29	NUM
ihlr-22948	157	2	.	.	PUNCT
ihlr-22948	158	1	utah	utah	PROPN
ihlr-22948	158	2	cancer	cancer	PROPN
ihlr-22948	158	3	registry	registry	PROPN
ihlr-22948	158	4	,	,	PUNCT
ihlr-22948	158	5	huntsman	huntsman	NOUN
ihlr-22948	158	6	cancer	cancer	NOUN
ihlr-22948	158	7	inst	inst	PROPN
ihlr-22948	158	8	.	.	PUNCT
ihlr-22948	159	1	u.	u.	PROPN
ihlr-22948	159	2	utah	utah	PROPN
ihlr-22948	160	1	https://uofuhealth.utah.edu/	https://uofuhealth.utah.edu/	PROPN
ihlr-22948	160	2	utah	utah	PROPN
ihlr-22948	160	3	-	-	PUNCT
ihlr-22948	160	4	cancer	cancer	NOUN
ihlr-22948	160	5	-	-	PUNCT
ihlr-22948	160	6	registry/	registry/	NOUN
ihlr-22948	160	7	[	[	X
ihlr-22948	160	8	https://perma.cc/gxh2-kj3j	https://perma.cc/gxh2-kj3j	X
ihlr-22948	160	9	]	]	X
ihlr-22948	160	10	.	.	PUNCT
ihlr-22948	161	1	30	30	NUM
ihlr-22948	161	2	.	.	PUNCT
ihlr-22948	162	1	welcome	welcome	NOUN
ihlr-22948	162	2	to	to	ADP
ihlr-22948	162	3	the	the	DET
ihlr-22948	162	4	utah	utah	PROPN
ihlr-22948	162	5	trauma	trauma	NOUN
ihlr-22948	162	6	registry	registry	NOUN
ihlr-22948	162	7	!	!	PROPN
ihlr-22948	162	8	,	,	PUNCT
ihlr-22948	162	9	utah	utah	PROPN
ihlr-22948	162	10	trauma	trauma	PROPN
ihlr-22948	162	11	registry	registry	NOUN
ihlr-22948	162	12	,	,	PUNCT
ihlr-22948	162	13	https://www	https://www	PROPN
ihlr-22948	162	14	.	.	PUNCT
ihlr-22948	162	15	utahtrauma.org/	utahtrauma.org/	PRON
ihlr-22948	163	1	[	[	X
ihlr-22948	163	2	https://perma.cc/v4bs-mpfy	https://perma.cc/v4bs-mpfy	NOUN
ihlr-22948	163	3	]	]	X
ihlr-22948	163	4	.	.	PUNCT
ihlr-22948	164	1	31	31	NUM
ihlr-22948	164	2	.	.	PUNCT
ihlr-22948	165	1	utah	utah	PROPN
ihlr-22948	165	2	statewide	statewide	ADJ
ihlr-22948	165	3	immunization	immunization	NOUN
ihlr-22948	165	4	information	information	NOUN
ihlr-22948	165	5	system	system	NOUN
ihlr-22948	165	6	,	,	PUNCT
ihlr-22948	165	7	utah	utah	PROPN
ihlr-22948	165	8	dep’t	dep’t	NOUN
ihlr-22948	165	9	health	health	NOUN
ihlr-22948	165	10	,	,	PUNCT
ihlr-22948	165	11	http://www	http://www	PROPN
ihlr-22948	165	12	.	.	PROPN
ihlr-22948	165	13	usiis.org/index.shtml	usiis.org/index.shtml	PROPN
ihlr-22948	166	1	[	[	X
ihlr-22948	166	2	https://perma.cc/u5q9-kmmb	https://perma.cc/u5q9-kmmb	NOUN
ihlr-22948	166	3	]	]	X
ihlr-22948	166	4	.	.	PUNCT
ihlr-22948	167	1	32	32	NUM
ihlr-22948	167	2	.	.	PUNCT
ihlr-22948	167	3	utah	utah	PROPN
ihlr-22948	167	4	birth	birth	NOUN
ihlr-22948	167	5	defect	defect	NOUN
ihlr-22948	167	6	network	network	NOUN
ihlr-22948	167	7	,	,	PUNCT
ihlr-22948	167	8	utah	utah	PROPN
ihlr-22948	167	9	dep’t	dep’t	NOUN
ihlr-22948	167	10	health	health	NOUN
ihlr-22948	167	11	,	,	PUNCT
ihlr-22948	167	12	https://health.utah.gov/cshcn/	https://health.utah.gov/cshcn/	NOUN
ihlr-22948	167	13	programs	program	NOUN
ihlr-22948	167	14	/	/	SYM
ihlr-22948	168	1	ubdn.html	ubdn.html	PROPN
ihlr-22948	168	2	[	[	X
ihlr-22948	168	3	https://perma.cc/xd9w-m8de	https://perma.cc/xd9w-m8de	X
ihlr-22948	168	4	]	]	X
ihlr-22948	168	5	(	(	PUNCT
ihlr-22948	168	6	last	last	ADJ
ihlr-22948	168	7	updated	update	VERB
ihlr-22948	168	8	oct	oct	PROPN
ihlr-22948	168	9	.	.	PROPN
ihlr-22948	168	10	4	4	NUM
ihlr-22948	168	11	,	,	PUNCT
ihlr-22948	168	12	2018	2018	NUM
ihlr-22948	168	13	)	)	PUNCT
ihlr-22948	168	14	.	.	PUNCT
ihlr-22948	169	1	33	33	NUM
ihlr-22948	169	2	.	.	PUNCT
ihlr-22948	170	1	utah	utah	PROPN
ihlr-22948	170	2	code	code	PROPN
ihlr-22948	170	3	ann	ann	PROPN
ihlr-22948	170	4	.	.	PUNCT
ihlr-22948	171	1	§	§	PROPN
ihlr-22948	171	2	26	26	NUM
ihlr-22948	171	3	-	-	PUNCT
ihlr-22948	171	4	8d-101—105	8d-101—105	PROPN
ihlr-22948	171	5	(	(	PUNCT
ihlr-22948	171	6	lexisnexis	lexisnexis	NOUN
ihlr-22948	171	7	2018	2018	NUM
ihlr-22948	171	8	)	)	PUNCT
ihlr-22948	171	9	.	.	PUNCT
ihlr-22948	172	1	50	50	NUM
ihlr-22948	172	2	indiana	indiana	PROPN
ihlr-22948	172	3	health	health	PROPN
ihlr-22948	172	4	law	law	NOUN
ihlr-22948	172	5	review	review	NOUN
ihlr-22948	172	6	[	[	X
ihlr-22948	172	7	vol	vol	NOUN
ihlr-22948	172	8	.	.	PUNCT
ihlr-22948	172	9	16:43	16:43	NUM
ihlr-22948	172	10	foundation34	foundation34	NOUN
ihlr-22948	172	11	is	be	AUX
ihlr-22948	172	12	an	an	DET
ihlr-22948	172	13	example	example	NOUN
ihlr-22948	172	14	,	,	PUNCT
ihlr-22948	172	15	as	as	SCONJ
ihlr-22948	172	16	is	be	AUX
ihlr-22948	172	17	the	the	DET
ihlr-22948	172	18	newer	new	ADJ
ihlr-22948	172	19	world	world	NOUN
ihlr-22948	172	20	bleeding	bleed	VERB
ihlr-22948	172	21	disorders	disorder	NOUN
ihlr-22948	172	22	registry	registry	NOUN
ihlr-22948	172	23	created	create	VERB
ihlr-22948	172	24	by	by	ADP
ihlr-22948	172	25	the	the	DET
ihlr-22948	172	26	world	world	PROPN
ihlr-22948	172	27	federation	federation	PROPN
ihlr-22948	172	28	of	of	ADP
ihlr-22948	172	29	hemophilia.35	hemophilia.35	NOUN
ihlr-22948	172	30	other	other	ADJ
ihlr-22948	172	31	registries	registry	NOUN
ihlr-22948	172	32	are	be	AUX
ihlr-22948	172	33	maintained	maintain	VERB
ihlr-22948	172	34	by	by	ADP
ihlr-22948	172	35	academic	academic	ADJ
ihlr-22948	172	36	medical	medical	ADJ
ihlr-22948	172	37	centers	center	NOUN
ihlr-22948	172	38	or	or	CCONJ
ihlr-22948	172	39	other	other	ADJ
ihlr-22948	172	40	not	not	PART
ihlr-22948	172	41	-	-	PUNCT
ihlr-22948	172	42	for	for	ADP
ihlr-22948	172	43	-	-	PUNCT
ihlr-22948	172	44	profit	profit	NOUN
ihlr-22948	172	45	entities	entity	NOUN
ihlr-22948	172	46	conducting	conduct	VERB
ihlr-22948	172	47	clinical	clinical	ADJ
ihlr-22948	172	48	research	research	NOUN
ihlr-22948	172	49	,	,	PUNCT
ihlr-22948	172	50	such	such	ADJ
ihlr-22948	172	51	as	as	ADP
ihlr-22948	172	52	sanford	sanford	PROPN
ihlr-22948	172	53	research.36	research.36	VERB
ihlr-22948	172	54	still	still	ADV
ihlr-22948	172	55	other	other	ADJ
ihlr-22948	172	56	registries	registry	NOUN
ihlr-22948	172	57	are	be	AUX
ihlr-22948	172	58	maintained	maintain	VERB
ihlr-22948	172	59	by	by	ADP
ihlr-22948	172	60	professional	professional	ADJ
ihlr-22948	172	61	organizations	organization	NOUN
ihlr-22948	172	62	.	.	PUNCT
ihlr-22948	173	1	the	the	DET
ihlr-22948	173	2	cardiac	cardiac	ADJ
ihlr-22948	173	3	and	and	CCONJ
ihlr-22948	173	4	orthopedic	orthopedic	ADJ
ihlr-22948	173	5	registries	registry	NOUN
ihlr-22948	173	6	described	describe	VERB
ihlr-22948	173	7	above	above	ADV
ihlr-22948	173	8	are	be	AUX
ihlr-22948	173	9	examples	example	NOUN
ihlr-22948	173	10	.	.	PUNCT
ihlr-22948	174	1	the	the	DET
ihlr-22948	174	2	registries	registry	NOUN
ihlr-22948	174	3	of	of	ADP
ihlr-22948	174	4	the	the	DET
ihlr-22948	174	5	american	american	PROPN
ihlr-22948	174	6	college	college	PROPN
ihlr-22948	174	7	of	of	ADP
ihlr-22948	174	8	cardiology	cardiology	NOUN
ihlr-22948	174	9	provide	provide	VERB
ihlr-22948	174	10	a	a	DET
ihlr-22948	174	11	number	number	NOUN
ihlr-22948	174	12	of	of	ADP
ihlr-22948	174	13	the	the	DET
ihlr-22948	174	14	functions	function	NOUN
ihlr-22948	174	15	of	of	ADP
ihlr-22948	174	16	professional	professional	ADJ
ihlr-22948	174	17	organizations	organization	NOUN
ihlr-22948	174	18	,	,	PUNCT
ihlr-22948	174	19	including	include	VERB
ihlr-22948	174	20	networking	networking	NOUN
ihlr-22948	174	21	,	,	PUNCT
ihlr-22948	174	22	quality	quality	NOUN
ihlr-22948	174	23	improvement	improvement	NOUN
ihlr-22948	174	24	,	,	PUNCT
ihlr-22948	174	25	and	and	CCONJ
ihlr-22948	174	26	certification	certification	NOUN
ihlr-22948	174	27	.	.	PUNCT
ihlr-22948	175	1	the	the	DET
ihlr-22948	175	2	joint	joint	ADJ
ihlr-22948	175	3	replacement	replacement	NOUN
ihlr-22948	175	4	procedure	procedure	NOUN
ihlr-22948	175	5	registry	registry	NOUN
ihlr-22948	175	6	of	of	ADP
ihlr-22948	175	7	the	the	DET
ihlr-22948	175	8	american	american	PROPN
ihlr-22948	175	9	academy	academy	PROPN
ihlr-22948	175	10	of	of	ADP
ihlr-22948	175	11	orthopaedic	orthopaedic	ADJ
ihlr-22948	175	12	surgeons	surgeon	NOUN
ihlr-22948	175	13	is	be	AUX
ihlr-22948	175	14	explicitly	explicitly	ADV
ihlr-22948	175	15	aimed	aim	VERB
ihlr-22948	175	16	to	to	PART
ihlr-22948	175	17	improve	improve	VERB
ihlr-22948	175	18	care	care	NOUN
ihlr-22948	175	19	quality	quality	NOUN
ihlr-22948	175	20	and	and	CCONJ
ihlr-22948	175	21	reduce	reduce	VERB
ihlr-22948	175	22	rates	rate	NOUN
ihlr-22948	175	23	of	of	ADP
ihlr-22948	175	24	surgical	surgical	ADJ
ihlr-22948	175	25	revision.37	revision.37	NOUN
ihlr-22948	175	26	finally	finally	ADV
ihlr-22948	175	27	,	,	PUNCT
ihlr-22948	175	28	some	some	DET
ihlr-22948	175	29	registries	registry	NOUN
ihlr-22948	175	30	are	be	AUX
ihlr-22948	175	31	maintained	maintain	VERB
ihlr-22948	175	32	by	by	ADP
ihlr-22948	175	33	provider	provider	NOUN
ihlr-22948	175	34	organizations	organization	NOUN
ihlr-22948	175	35	,	,	PUNCT
ihlr-22948	175	36	health	health	NOUN
ihlr-22948	175	37	care	care	NOUN
ihlr-22948	175	38	payers	payer	NOUN
ihlr-22948	175	39	,	,	PUNCT
ihlr-22948	175	40	or	or	CCONJ
ihlr-22948	175	41	pharmaceutical	pharmaceutical	NOUN
ihlr-22948	175	42	and	and	CCONJ
ihlr-22948	175	43	medical	medical	ADJ
ihlr-22948	175	44	device	device	NOUN
ihlr-22948	175	45	companies	company	NOUN
ihlr-22948	175	46	.	.	PUNCT
ihlr-22948	176	1	some	some	PRON
ihlr-22948	176	2	of	of	ADP
ihlr-22948	176	3	these	these	DET
ihlr-22948	176	4	organizations	organization	NOUN
ihlr-22948	176	5	are	be	AUX
ihlr-22948	176	6	non	non	NOUN
ihlr-22948	176	7	-	-	NOUN
ihlr-22948	176	8	profits	profit	NOUN
ihlr-22948	176	9	but	but	CCONJ
ihlr-22948	176	10	many	many	ADJ
ihlr-22948	176	11	others	other	NOUN
ihlr-22948	176	12	are	be	AUX
ihlr-22948	176	13	for	for	ADP
ihlr-22948	176	14	-	-	PUNCT
ihlr-22948	176	15	profit	profit	NOUN
ihlr-22948	176	16	corporations	corporation	NOUN
ihlr-22948	176	17	interested	interested	ADJ
ihlr-22948	176	18	in	in	ADP
ihlr-22948	176	19	using	use	VERB
ihlr-22948	176	20	registry	registry	NOUN
ihlr-22948	176	21	data	datum	NOUN
ihlr-22948	176	22	to	to	PART
ihlr-22948	176	23	further	further	VERB
ihlr-22948	176	24	their	their	PRON
ihlr-22948	176	25	corporate	corporate	ADJ
ihlr-22948	176	26	goals	goal	NOUN
ihlr-22948	176	27	.	.	PUNCT
ihlr-22948	177	1	these	these	DET
ihlr-22948	177	2	registries	registry	NOUN
ihlr-22948	177	3	are	be	AUX
ihlr-22948	177	4	especially	especially	ADV
ihlr-22948	177	5	useful	useful	ADJ
ihlr-22948	177	6	for	for	ADP
ihlr-22948	177	7	optimizing	optimize	VERB
ihlr-22948	177	8	care	care	NOUN
ihlr-22948	177	9	,	,	PUNCT
ihlr-22948	177	10	reducing	reduce	VERB
ihlr-22948	177	11	care	care	NOUN
ihlr-22948	177	12	costs	cost	NOUN
ihlr-22948	177	13	,	,	PUNCT
ihlr-22948	177	14	furthering	further	VERB
ihlr-22948	177	15	understanding	understanding	NOUN
ihlr-22948	177	16	about	about	ADP
ihlr-22948	177	17	the	the	DET
ihlr-22948	177	18	value	value	NOUN
ihlr-22948	177	19	of	of	ADP
ihlr-22948	177	20	treatments	treatment	NOUN
ihlr-22948	177	21	,	,	PUNCT
ihlr-22948	177	22	and	and	CCONJ
ihlr-22948	177	23	developing	develop	VERB
ihlr-22948	177	24	new	new	ADJ
ihlr-22948	177	25	treatments.38	treatments.38	NOUN
ihlr-22948	177	26	controversies	controversy	NOUN
ihlr-22948	177	27	may	may	AUX
ihlr-22948	177	28	arise	arise	VERB
ihlr-22948	177	29	,	,	PUNCT
ihlr-22948	177	30	however	however	ADV
ihlr-22948	177	31	,	,	PUNCT
ihlr-22948	177	32	if	if	SCONJ
ihlr-22948	177	33	patients	patient	NOUN
ihlr-22948	177	34	providing	provide	VERB
ihlr-22948	177	35	data	datum	NOUN
ihlr-22948	177	36	believe	believe	VERB
ihlr-22948	177	37	they	they	PRON
ihlr-22948	177	38	are	be	AUX
ihlr-22948	177	39	contributing	contribute	VERB
ihlr-22948	177	40	to	to	ADP
ihlr-22948	177	41	the	the	DET
ihlr-22948	177	42	advancement	advancement	NOUN
ihlr-22948	177	43	of	of	ADP
ihlr-22948	177	44	knowledge	knowledge	NOUN
ihlr-22948	177	45	about	about	ADP
ihlr-22948	177	46	their	their	PRON
ihlr-22948	177	47	disease	disease	NOUN
ihlr-22948	177	48	while	while	SCONJ
ihlr-22948	177	49	the	the	DET
ihlr-22948	177	50	ultimate	ultimate	ADJ
ihlr-22948	177	51	outcome	outcome	NOUN
ihlr-22948	177	52	of	of	ADP
ihlr-22948	177	53	the	the	DET
ihlr-22948	177	54	use	use	NOUN
ihlr-22948	177	55	of	of	ADP
ihlr-22948	177	56	the	the	DET
ihlr-22948	177	57	registry	registry	NOUN
ihlr-22948	177	58	information	information	NOUN
ihlr-22948	177	59	is	be	AUX
ihlr-22948	177	60	a	a	DET
ihlr-22948	177	61	commercially	commercially	ADV
ihlr-22948	177	62	marketed	market	VERB
ihlr-22948	177	63	product	product	NOUN
ihlr-22948	177	64	protected	protect	VERB
ihlr-22948	177	65	by	by	ADP
ihlr-22948	177	66	intellectual	intellectual	ADJ
ihlr-22948	177	67	property	property	NOUN
ihlr-22948	177	68	rights	right	NOUN
ihlr-22948	177	69	,	,	PUNCT
ihlr-22948	177	70	such	such	ADJ
ihlr-22948	177	71	as	as	ADP
ihlr-22948	177	72	a	a	DET
ihlr-22948	177	73	genetic	genetic	ADJ
ihlr-22948	177	74	test	test	NOUN
ihlr-22948	177	75	or	or	CCONJ
ihlr-22948	177	76	a	a	DET
ihlr-22948	177	77	novel	novel	NOUN
ihlr-22948	177	78	pharmaceutical.39	pharmaceutical.39	NOUN
ihlr-22948	177	79	3	3	NUM
ihlr-22948	177	80	.	.	X
ihlr-22948	177	81	sources	source	NOUN
ihlr-22948	177	82	and	and	CCONJ
ihlr-22948	177	83	types	type	NOUN
ihlr-22948	177	84	of	of	ADP
ihlr-22948	177	85	registry	registry	NOUN
ihlr-22948	177	86	information	information	NOUN
ihlr-22948	177	87	much	much	ADJ
ihlr-22948	177	88	of	of	ADP
ihlr-22948	177	89	the	the	DET
ihlr-22948	177	90	value	value	NOUN
ihlr-22948	177	91	of	of	ADP
ihlr-22948	177	92	registries	registry	NOUN
ihlr-22948	177	93	lies	lie	VERB
ihlr-22948	177	94	in	in	ADP
ihlr-22948	177	95	the	the	DET
ihlr-22948	177	96	utility	utility	NOUN
ihlr-22948	177	97	of	of	ADP
ihlr-22948	177	98	the	the	DET
ihlr-22948	177	99	data	datum	NOUN
ihlr-22948	177	100	they	they	PRON
ihlr-22948	177	101	collect	collect	VERB
ihlr-22948	177	102	.	.	PUNCT
ihlr-22948	178	1	the	the	DET
ihlr-22948	178	2	utility	utility	NOUN
ihlr-22948	178	3	of	of	ADP
ihlr-22948	178	4	the	the	DET
ihlr-22948	178	5	registry	registry	NOUN
ihlr-22948	178	6	is	be	AUX
ihlr-22948	178	7	found	find	VERB
ihlr-22948	178	8	in	in	ADP
ihlr-22948	178	9	the	the	DET
ihlr-22948	178	10	integrity	integrity	NOUN
ihlr-22948	178	11	of	of	ADP
ihlr-22948	178	12	its	its	PRON
ihlr-22948	178	13	data	datum	NOUN
ihlr-22948	178	14	and	and	CCONJ
ihlr-22948	178	15	whether	whether	SCONJ
ihlr-22948	178	16	the	the	DET
ihlr-22948	178	17	data	datum	NOUN
ihlr-22948	178	18	can	can	AUX
ihlr-22948	178	19	be	be	AUX
ihlr-22948	178	20	shared	share	VERB
ihlr-22948	178	21	and	and	CCONJ
ihlr-22948	178	22	utilized	utilize	VERB
ihlr-22948	178	23	by	by	ADP
ihlr-22948	178	24	a	a	DET
ihlr-22948	178	25	registry	registry	NOUN
ihlr-22948	178	26	’s	’s	PART
ihlr-22948	178	27	stakeholders	stakeholder	NOUN
ihlr-22948	178	28	and	and	CCONJ
ihlr-22948	178	29	potential	potential	ADJ
ihlr-22948	178	30	partners	partner	NOUN
ihlr-22948	178	31	.	.	PUNCT
ihlr-22948	179	1	registry	registry	PROPN
ihlr-22948	179	2	data	data	PROPN
ihlr-22948	179	3	is	be	AUX
ihlr-22948	179	4	most	most	ADV
ihlr-22948	179	5	useful	useful	ADJ
ihlr-22948	179	6	if	if	SCONJ
ihlr-22948	179	7	it	it	PRON
ihlr-22948	179	8	is	be	AUX
ihlr-22948	179	9	standardized	standardize	VERB
ihlr-22948	179	10	.	.	PUNCT
ihlr-22948	180	1	registries	registry	NOUN
ihlr-22948	180	2	are	be	AUX
ihlr-22948	180	3	urged	urge	VERB
ihlr-22948	180	4	to	to	PART
ihlr-22948	180	5	include	include	VERB
ihlr-22948	180	6	similar	similar	ADJ
ihlr-22948	180	7	core	core	NOUN
ihlr-22948	180	8	components	component	NOUN
ihlr-22948	180	9	and	and	CCONJ
ihlr-22948	180	10	to	to	PART
ihlr-22948	180	11	structure	structure	VERB
ihlr-22948	180	12	the	the	DET
ihlr-22948	180	13	data	datum	NOUN
ihlr-22948	180	14	in	in	ADP
ihlr-22948	180	15	ways	way	NOUN
ihlr-22948	180	16	that	that	PRON
ihlr-22948	180	17	further	further	ADJ
ihlr-22948	180	18	interoperability	interoperability	NOUN
ihlr-22948	180	19	.	.	PUNCT
ihlr-22948	181	1	standard	standard	ADJ
ihlr-22948	181	2	core	core	NOUN
ihlr-22948	181	3	components	component	NOUN
ihlr-22948	181	4	include	include	VERB
ihlr-22948	181	5	a	a	DET
ihlr-22948	181	6	description	description	NOUN
ihlr-22948	181	7	of	of	ADP
ihlr-22948	181	8	the	the	DET
ihlr-22948	181	9	disease	disease	NOUN
ihlr-22948	181	10	that	that	PRON
ihlr-22948	181	11	will	will	AUX
ihlr-22948	181	12	be	be	AUX
ihlr-22948	181	13	34	34	NUM
ihlr-22948	181	14	.	.	PUNCT
ihlr-22948	182	1	patient	patient	ADJ
ihlr-22948	182	2	registry	registry	NOUN
ihlr-22948	182	3	,	,	PUNCT
ihlr-22948	182	4	cystic	cystic	ADJ
ihlr-22948	182	5	fibrosis	fibrosis	NOUN
ihlr-22948	182	6	found	find	VERB
ihlr-22948	182	7	.	.	PUNCT
ihlr-22948	183	1	,	,	PUNCT
ihlr-22948	183	2	https://www.cff.org/research/researcherresources/patient-registry/	https://www.cff.org/research/researcherresources/patient-registry/	X
ihlr-22948	184	1	[	[	X
ihlr-22948	184	2	https://perma.cc/5nj2-best	https://perma.cc/5nj2-best	X
ihlr-22948	184	3	]	]	X
ihlr-22948	184	4	.	.	PUNCT
ihlr-22948	184	5	35	35	NUM
ihlr-22948	184	6	.	.	PUNCT
ihlr-22948	185	1	wfh	wfh	NOUN
ihlr-22948	185	2	world	world	NOUN
ihlr-22948	185	3	bleeding	bleed	VERB
ihlr-22948	185	4	disorders	disorder	NOUN
ihlr-22948	185	5	registry	registry	NOUN
ihlr-22948	185	6	,	,	PUNCT
ihlr-22948	185	7	world	world	NOUN
ihlr-22948	185	8	fed’n	fed’n	NOUN
ihlr-22948	185	9	hemophilia	hemophilia	PROPN
ihlr-22948	185	10	,	,	PUNCT
ihlr-22948	185	11	https://www.wfh	https://www.wfh	PROPN
ihlr-22948	185	12	.	.	PUNCT
ihlr-22948	186	1	org	org	PROPN
ihlr-22948	186	2	/	/	SYM
ihlr-22948	186	3	en	en	X
ihlr-22948	186	4	/	/	SYM
ihlr-22948	186	5	wbdr	wbdr	ADJ
ihlr-22948	187	1	[	[	X
ihlr-22948	187	2	https://perma.cc/y85v-zrky	https://perma.cc/y85v-zrky	X
ihlr-22948	187	3	]	]	X
ihlr-22948	187	4	(	(	PUNCT
ihlr-22948	187	5	last	last	ADJ
ihlr-22948	187	6	updated	update	VERB
ihlr-22948	187	7	jan	jan	PROPN
ihlr-22948	187	8	.	.	PROPN
ihlr-22948	187	9	2018	2018	NUM
ihlr-22948	187	10	)	)	PUNCT
ihlr-22948	187	11	.	.	PUNCT
ihlr-22948	188	1	36	36	NUM
ihlr-22948	188	2	.	.	PUNCT
ihlr-22948	188	3	research	research	NOUN
ihlr-22948	188	4	with	with	ADP
ihlr-22948	188	5	cords	cord	NOUN
ihlr-22948	188	6	,	,	PUNCT
ihlr-22948	188	7	sanford	sanford	PROPN
ihlr-22948	188	8	res	res	PROPN
ihlr-22948	188	9	.	.	PROPN
ihlr-22948	188	10	,	,	PUNCT
ihlr-22948	188	11	www.sanfordresearch.org/specialprograms/	www.sanfordresearch.org/specialprograms/	NOUN
ihlr-22948	188	12	cords	cords	PROPN
ihlr-22948	188	13	/	/	SYM
ihlr-22948	188	14	researchers/	researchers/	PROPN
ihlr-22948	188	15	[	[	PUNCT
ihlr-22948	188	16	https://perma.cc/5vva-gv5y	https://perma.cc/5vva-gv5y	NOUN
ihlr-22948	188	17	]	]	PUNCT
ihlr-22948	188	18	.	.	PUNCT
ihlr-22948	189	1	37	37	NUM
ihlr-22948	189	2	.	.	PUNCT
ihlr-22948	190	1	american	american	ADJ
ihlr-22948	190	2	joint	joint	ADJ
ihlr-22948	190	3	replacement	replacement	NOUN
ihlr-22948	190	4	registry	registry	NOUN
ihlr-22948	190	5	,	,	PUNCT
ihlr-22948	190	6	am	be	AUX
ihlr-22948	190	7	.	.	PUNCT
ihlr-22948	191	1	acad	acad	PROPN
ihlr-22948	191	2	.	.	PUNCT
ihlr-22948	192	1	orthopedic	orthopedic	ADJ
ihlr-22948	192	2	surgeons	surgeon	NOUN
ihlr-22948	192	3	,	,	PUNCT
ihlr-22948	192	4	http://www	http://www	PROPN
ihlr-22948	192	5	.	.	PUNCT
ihlr-22948	193	1	ajrr.net	ajrr.net	X
ihlr-22948	194	1	[	[	X
ihlr-22948	194	2	https://perma.cc/dxs7-9n2	https://perma.cc/dxs7-9n2	NOUN
ihlr-22948	194	3	t	t	PROPN
ihlr-22948	194	4	]	]	PUNCT
ihlr-22948	194	5	.	.	PUNCT
ihlr-22948	195	1	38	38	NUM
ihlr-22948	195	2	.	.	PUNCT
ihlr-22948	196	1	brian	brian	PROPN
ihlr-22948	196	2	kelly	kelly	PROPN
ihlr-22948	196	3	,	,	PUNCT
ihlr-22948	196	4	registries	registry	NOUN
ihlr-22948	196	5	and	and	CCONJ
ihlr-22948	196	6	the	the	DET
ihlr-22948	196	7	future	future	NOUN
ihlr-22948	196	8	of	of	ADP
ihlr-22948	196	9	medicine	medicine	NOUN
ihlr-22948	196	10	,	,	PUNCT
ihlr-22948	196	11	pharmexec	pharmexec	PROPN
ihlr-22948	196	12	(	(	PUNCT
ihlr-22948	196	13	may	may	PROPN
ihlr-22948	196	14	16	16	NUM
ihlr-22948	196	15	,	,	PUNCT
ihlr-22948	196	16	2016	2016	NUM
ihlr-22948	196	17	)	)	PUNCT
ihlr-22948	196	18	,	,	PUNCT
ihlr-22948	196	19	http://www.pharmexec.com/registries-and-future-medicine	http://www.pharmexec.com/registries-and-future-medicine	PROPN
ihlr-22948	197	1	[	[	X
ihlr-22948	197	2	https://perma.cc/6qxh-lsxn	https://perma.cc/6qxh-lsxn	X
ihlr-22948	197	3	]	]	X
ihlr-22948	197	4	.	.	PUNCT
ihlr-22948	198	1	39	39	NUM
ihlr-22948	198	2	.	.	PUNCT
ihlr-22948	199	1	such	such	ADJ
ihlr-22948	199	2	was	be	AUX
ihlr-22948	199	3	the	the	DET
ihlr-22948	199	4	controversy	controversy	NOUN
ihlr-22948	199	5	when	when	SCONJ
ihlr-22948	199	6	patients	patient	NOUN
ihlr-22948	199	7	with	with	ADP
ihlr-22948	199	8	canavan	canavan	NOUN
ihlr-22948	199	9	disease	disease	NOUN
ihlr-22948	199	10	contributed	contribute	VERB
ihlr-22948	199	11	data	datum	NOUN
ihlr-22948	199	12	and	and	CCONJ
ihlr-22948	199	13	biological	biological	ADJ
ihlr-22948	199	14	samples	sample	NOUN
ihlr-22948	199	15	to	to	ADP
ihlr-22948	199	16	researchers	researcher	NOUN
ihlr-22948	199	17	who	who	PRON
ihlr-22948	199	18	then	then	ADV
ihlr-22948	199	19	developed	develop	VERB
ihlr-22948	199	20	a	a	DET
ihlr-22948	199	21	test	test	NOUN
ihlr-22948	199	22	to	to	PART
ihlr-22948	199	23	identify	identify	VERB
ihlr-22948	199	24	the	the	DET
ihlr-22948	199	25	gene	gene	NOUN
ihlr-22948	199	26	and	and	CCONJ
ihlr-22948	199	27	patented	patent	VERB
ihlr-22948	199	28	the	the	DET
ihlr-22948	199	29	test	test	NOUN
ihlr-22948	199	30	.	.	PUNCT
ihlr-22948	200	1	greenberg	greenberg	PROPN
ihlr-22948	200	2	v.	v.	PROPN
ihlr-22948	200	3	miami	miami	PROPN
ihlr-22948	200	4	children	children	PROPN
ihlr-22948	200	5	’s	’s	PART
ihlr-22948	200	6	hosp	hosp	PROPN
ihlr-22948	200	7	.	.	PUNCT
ihlr-22948	201	1	research	research	NOUN
ihlr-22948	201	2	inst	inst	PROPN
ihlr-22948	201	3	.	.	PROPN
ihlr-22948	201	4	inc	inc	PROPN
ihlr-22948	201	5	.	.	PROPN
ihlr-22948	201	6	,	,	PUNCT
ihlr-22948	201	7	264	264	NUM
ihlr-22948	201	8	f.	f.	PROPN
ihlr-22948	201	9	supp	supp	PROPN
ihlr-22948	201	10	.	.	PUNCT
ihlr-22948	202	1	2d	2d	NUM
ihlr-22948	202	2	1064	1064	NUM
ihlr-22948	202	3	(	(	PUNCT
ihlr-22948	202	4	s.d	s.d	PROPN
ihlr-22948	202	5	.	.	PROPN
ihlr-22948	202	6	fla	fla	PROPN
ihlr-22948	202	7	.	.	PUNCT
ihlr-22948	202	8	2003	2003	NUM
ihlr-22948	202	9	)	)	PUNCT
ihlr-22948	202	10	.	.	PUNCT
ihlr-22948	203	1	2018	2018	NUM
ihlr-22948	203	2	]	]	PUNCT
ihlr-22948	203	3	patient	patient	ADJ
ihlr-22948	203	4	registries	registry	NOUN
ihlr-22948	203	5	and	and	CCONJ
ihlr-22948	203	6	their	their	PRON
ihlr-22948	203	7	governance	governance	NOUN
ihlr-22948	203	8	51	51	NUM
ihlr-22948	203	9	followed	follow	VERB
ihlr-22948	203	10	,	,	PUNCT
ihlr-22948	203	11	a	a	DET
ihlr-22948	203	12	determination	determination	NOUN
ihlr-22948	203	13	of	of	ADP
ihlr-22948	203	14	effective	effective	ADJ
ihlr-22948	203	15	standards	standard	NOUN
ihlr-22948	203	16	for	for	ADP
ihlr-22948	203	17	data	data	NOUN
ihlr-22948	203	18	collection	collection	NOUN
ihlr-22948	203	19	,	,	PUNCT
ihlr-22948	203	20	and	and	CCONJ
ihlr-22948	203	21	measurement	measurement	NOUN
ihlr-22948	203	22	of	of	ADP
ihlr-22948	203	23	data	datum	NOUN
ihlr-22948	203	24	results.40	results.40	PROPN
ihlr-22948	203	25	as	as	ADP
ihlr-22948	203	26	registries	registry	NOUN
ihlr-22948	203	27	increasingly	increasingly	ADV
ihlr-22948	203	28	collect	collect	VERB
ihlr-22948	203	29	data	datum	NOUN
ihlr-22948	203	30	from	from	ADP
ihlr-22948	203	31	multiple	multiple	ADJ
ihlr-22948	203	32	sources	source	NOUN
ihlr-22948	203	33	and	and	CCONJ
ihlr-22948	203	34	share	share	VERB
ihlr-22948	203	35	data	datum	NOUN
ihlr-22948	203	36	cooperatively	cooperatively	ADV
ihlr-22948	203	37	,	,	PUNCT
ihlr-22948	203	38	interoperability	interoperability	NOUN
ihlr-22948	203	39	poses	pose	VERB
ihlr-22948	203	40	significant	significant	ADJ
ihlr-22948	203	41	challenges	challenge	NOUN
ihlr-22948	203	42	,	,	PUNCT
ihlr-22948	203	43	however.41	however.41	NOUN
ihlr-22948	203	44	registries	registry	NOUN
ihlr-22948	203	45	acquire	acquire	VERB
ihlr-22948	203	46	information	information	NOUN
ihlr-22948	203	47	from	from	ADP
ihlr-22948	203	48	varied	varied	ADJ
ihlr-22948	203	49	sources	source	NOUN
ihlr-22948	203	50	.	.	PUNCT
ihlr-22948	204	1	some	some	PRON
ihlr-22948	204	2	contain	contain	VERB
ihlr-22948	204	3	information	information	NOUN
ihlr-22948	204	4	drawn	draw	VERB
ihlr-22948	204	5	directly	directly	ADV
ihlr-22948	204	6	from	from	ADP
ihlr-22948	204	7	medical	medical	ADJ
ihlr-22948	204	8	records	record	NOUN
ihlr-22948	204	9	.	.	PUNCT
ihlr-22948	205	1	for	for	ADP
ihlr-22948	205	2	example	example	NOUN
ihlr-22948	205	3	,	,	PUNCT
ihlr-22948	205	4	the	the	DET
ihlr-22948	205	5	registry	registry	NOUN
ihlr-22948	205	6	devoted	devote	VERB
ihlr-22948	205	7	to	to	ADP
ihlr-22948	205	8	pompe	pompe	PROPN
ihlr-22948	205	9	disease	disease	PROPN
ihlr-22948	205	10	,	,	PUNCT
ihlr-22948	205	11	a	a	DET
ihlr-22948	205	12	glycogen	glycogen	NOUN
ihlr-22948	205	13	storage	storage	NOUN
ihlr-22948	205	14	disorder	disorder	NOUN
ihlr-22948	205	15	,	,	PUNCT
ihlr-22948	205	16	tracks	track	VERB
ihlr-22948	205	17	the	the	DET
ihlr-22948	205	18	clinical	clinical	ADJ
ihlr-22948	205	19	outcomes	outcome	NOUN
ihlr-22948	205	20	for	for	ADP
ihlr-22948	205	21	patients	patient	NOUN
ihlr-22948	205	22	with	with	ADP
ihlr-22948	205	23	this	this	DET
ihlr-22948	205	24	condition	condition	NOUN
ihlr-22948	205	25	as	as	SCONJ
ihlr-22948	205	26	they	they	PRON
ihlr-22948	205	27	are	be	AUX
ihlr-22948	205	28	recorded	record	VERB
ihlr-22948	205	29	in	in	ADP
ihlr-22948	205	30	the	the	DET
ihlr-22948	205	31	medical	medical	ADJ
ihlr-22948	205	32	records	record	NOUN
ihlr-22948	205	33	of	of	ADP
ihlr-22948	205	34	the	the	DET
ihlr-22948	205	35	patients	patient	NOUN
ihlr-22948	205	36	’	'	PUNCT
ihlr-22948	205	37	treating	treat	VERB
ihlr-22948	205	38	physicians.42	physicians.42	NOUN
ihlr-22948	205	39	some	some	DET
ihlr-22948	205	40	registries	registry	NOUN
ihlr-22948	205	41	such	such	ADJ
ihlr-22948	205	42	as	as	ADP
ihlr-22948	205	43	cancer	cancer	NOUN
ihlr-22948	205	44	registries	registry	NOUN
ihlr-22948	205	45	contain	contain	VERB
ihlr-22948	205	46	data	datum	NOUN
ihlr-22948	205	47	reported	report	VERB
ihlr-22948	205	48	by	by	ADP
ihlr-22948	205	49	health	health	NOUN
ihlr-22948	205	50	care	care	NOUN
ihlr-22948	205	51	providers	provider	NOUN
ihlr-22948	205	52	.	.	PUNCT
ihlr-22948	206	1	other	other	ADJ
ihlr-22948	206	2	registries	registry	NOUN
ihlr-22948	206	3	contain	contain	VERB
ihlr-22948	206	4	information	information	NOUN
ihlr-22948	206	5	entered	enter	VERB
ihlr-22948	206	6	by	by	ADP
ihlr-22948	206	7	patients	patient	NOUN
ihlr-22948	206	8	themselves	themselves	PRON
ihlr-22948	206	9	or	or	CCONJ
ihlr-22948	206	10	their	their	PRON
ihlr-22948	206	11	family	family	NOUN
ihlr-22948	206	12	members	member	NOUN
ihlr-22948	206	13	.	.	PUNCT
ihlr-22948	207	1	some	some	DET
ihlr-22948	207	2	registries	registry	NOUN
ihlr-22948	207	3	draw	draw	VERB
ihlr-22948	207	4	data	datum	NOUN
ihlr-22948	207	5	from	from	ADP
ihlr-22948	207	6	multiple	multiple	ADJ
ihlr-22948	207	7	sources	source	NOUN
ihlr-22948	207	8	,	,	PUNCT
ihlr-22948	207	9	including	include	VERB
ihlr-22948	207	10	medical	medical	ADJ
ihlr-22948	207	11	records	record	NOUN
ihlr-22948	207	12	directly	directly	ADV
ihlr-22948	207	13	from	from	ADP
ihlr-22948	207	14	providers	provider	NOUN
ihlr-22948	207	15	,	,	PUNCT
ihlr-22948	207	16	medical	medical	ADJ
ihlr-22948	207	17	records	record	NOUN
ihlr-22948	207	18	uploaded	upload	VERB
ihlr-22948	207	19	by	by	ADP
ihlr-22948	207	20	participants	participant	NOUN
ihlr-22948	207	21	,	,	PUNCT
ihlr-22948	207	22	and	and	CCONJ
ihlr-22948	207	23	additional	additional	ADJ
ihlr-22948	207	24	information	information	NOUN
ihlr-22948	207	25	provided	provide	VERB
ihlr-22948	207	26	by	by	ADP
ihlr-22948	207	27	patients	patient	NOUN
ihlr-22948	207	28	themselves.43	themselves.43	NOUN
ihlr-22948	207	29	registries	registry	NOUN
ihlr-22948	207	30	may	may	AUX
ihlr-22948	207	31	also	also	ADV
ihlr-22948	207	32	have	have	VERB
ihlr-22948	207	33	data	datum	NOUN
ihlr-22948	207	34	that	that	PRON
ihlr-22948	207	35	allows	allow	VERB
ihlr-22948	207	36	research	research	NOUN
ihlr-22948	207	37	on	on	ADP
ihlr-22948	207	38	the	the	DET
ihlr-22948	207	39	impact	impact	NOUN
ihlr-22948	207	40	of	of	ADP
ihlr-22948	207	41	exposure	exposure	NOUN
ihlr-22948	207	42	to	to	ADP
ihlr-22948	207	43	traumatic	traumatic	ADJ
ihlr-22948	207	44	events	event	NOUN
ihlr-22948	207	45	or	or	CCONJ
ihlr-22948	207	46	environmental	environmental	ADJ
ihlr-22948	207	47	disasters	disaster	NOUN
ihlr-22948	207	48	.	.	PUNCT
ihlr-22948	208	1	for	for	ADP
ihlr-22948	208	2	example	example	NOUN
ihlr-22948	208	3	,	,	PUNCT
ihlr-22948	208	4	there	there	PRON
ihlr-22948	208	5	is	be	VERB
ihlr-22948	208	6	a	a	DET
ihlr-22948	208	7	registry	registry	NOUN
ihlr-22948	208	8	of	of	ADP
ihlr-22948	208	9	rescue	rescue	NOUN
ihlr-22948	208	10	workers	worker	NOUN
ihlr-22948	208	11	and	and	CCONJ
ihlr-22948	208	12	people	people	NOUN
ihlr-22948	208	13	who	who	PRON
ihlr-22948	208	14	were	be	AUX
ihlr-22948	208	15	in	in	ADP
ihlr-22948	208	16	the	the	DET
ihlr-22948	208	17	immediate	immediate	ADJ
ihlr-22948	208	18	area	area	NOUN
ihlr-22948	208	19	of	of	ADP
ihlr-22948	208	20	the	the	DET
ihlr-22948	208	21	world	world	NOUN
ihlr-22948	208	22	trade	trade	NOUN
ihlr-22948	208	23	center	center	NOUN
ihlr-22948	208	24	disaster,44	disaster,44	NOUN
ihlr-22948	208	25	and	and	CCONJ
ihlr-22948	208	26	a	a	DET
ihlr-22948	208	27	registry	registry	NOUN
ihlr-22948	208	28	has	have	AUX
ihlr-22948	208	29	recently	recently	ADV
ihlr-22948	208	30	been	be	AUX
ihlr-22948	208	31	established	establish	VERB
ihlr-22948	208	32	for	for	ADP
ihlr-22948	208	33	people	people	NOUN
ihlr-22948	208	34	who	who	PRON
ihlr-22948	208	35	were	be	AUX
ihlr-22948	208	36	in	in	ADP
ihlr-22948	208	37	houston	houston	PROPN
ihlr-22948	208	38	during	during	ADP
ihlr-22948	208	39	hurricane	hurricane	NOUN
ihlr-22948	208	40	harvey.45	harvey.45	PROPN
ihlr-22948	208	41	registries	registry	NOUN
ihlr-22948	208	42	also	also	ADV
ihlr-22948	208	43	vary	vary	VERB
ihlr-22948	208	44	on	on	ADP
ihlr-22948	208	45	whether	whether	SCONJ
ihlr-22948	208	46	the	the	DET
ihlr-22948	208	47	information	information	NOUN
ihlr-22948	208	48	in	in	ADP
ihlr-22948	208	49	them	they	PRON
ihlr-22948	208	50	is	be	AUX
ihlr-22948	208	51	collected	collect	VERB
ihlr-22948	208	52	with	with	ADP
ihlr-22948	208	53	the	the	DET
ihlr-22948	208	54	consent	consent	NOUN
ihlr-22948	208	55	of	of	ADP
ihlr-22948	208	56	the	the	DET
ihlr-22948	208	57	participants	participant	NOUN
ihlr-22948	208	58	.	.	PUNCT
ihlr-22948	209	1	when	when	SCONJ
ihlr-22948	209	2	registries	registry	NOUN
ihlr-22948	209	3	are	be	AUX
ihlr-22948	209	4	constructed	construct	VERB
ihlr-22948	209	5	as	as	ADP
ihlr-22948	209	6	part	part	NOUN
ihlr-22948	209	7	of	of	ADP
ihlr-22948	209	8	clinical	clinical	ADJ
ihlr-22948	209	9	research	research	NOUN
ihlr-22948	209	10	and	and	CCONJ
ihlr-22948	209	11	contain	contain	VERB
ihlr-22948	209	12	identifiable	identifiable	ADJ
ihlr-22948	209	13	patient	patient	ADJ
ihlr-22948	209	14	information	information	NOUN
ihlr-22948	209	15	,	,	PUNCT
ihlr-22948	209	16	patients	patient	NOUN
ihlr-22948	209	17	(	(	PUNCT
ihlr-22948	209	18	or	or	CCONJ
ihlr-22948	209	19	their	their	PRON
ihlr-22948	209	20	responsible	responsible	ADJ
ihlr-22948	209	21	persons	person	NOUN
ihlr-22948	209	22	on	on	ADP
ihlr-22948	209	23	their	their	PRON
ihlr-22948	209	24	behalf	behalf	NOUN
ihlr-22948	209	25	)	)	PUNCT
ihlr-22948	209	26	consent	consent	NOUN
ihlr-22948	209	27	to	to	ADP
ihlr-22948	209	28	participation	participation	NOUN
ihlr-22948	209	29	.	.	PUNCT
ihlr-22948	210	1	consent	consent	NOUN
ihlr-22948	210	2	may	may	AUX
ihlr-22948	210	3	permit	permit	VERB
ihlr-22948	210	4	data	data	NOUN
ihlr-22948	210	5	collection	collection	NOUN
ihlr-22948	210	6	over	over	ADP
ihlr-22948	210	7	extended	extended	ADJ
ihlr-22948	210	8	periods	period	NOUN
ihlr-22948	210	9	of	of	ADP
ihlr-22948	210	10	time	time	NOUN
ihlr-22948	210	11	,	,	PUNCT
ihlr-22948	210	12	however	however	ADV
ihlr-22948	210	13	,	,	PUNCT
ihlr-22948	210	14	and	and	CCONJ
ihlr-22948	210	15	patients	patient	NOUN
ihlr-22948	210	16	may	may	AUX
ihlr-22948	210	17	lose	lose	VERB
ihlr-22948	210	18	track	track	NOUN
ihlr-22948	210	19	of	of	ADP
ihlr-22948	210	20	their	their	PRON
ihlr-22948	210	21	participation	participation	NOUN
ihlr-22948	210	22	in	in	ADP
ihlr-22948	210	23	the	the	DET
ihlr-22948	210	24	registry	registry	NOUN
ihlr-22948	210	25	.	.	PUNCT
ihlr-22948	211	1	moreover	moreover	ADV
ihlr-22948	211	2	,	,	PUNCT
ihlr-22948	211	3	many	many	ADJ
ihlr-22948	211	4	registries	registry	NOUN
ihlr-22948	211	5	are	be	AUX
ihlr-22948	211	6	devoted	devote	VERB
ihlr-22948	211	7	to	to	ADP
ihlr-22948	211	8	conditions	condition	NOUN
ihlr-22948	211	9	that	that	PRON
ihlr-22948	211	10	are	be	AUX
ihlr-22948	211	11	manifested	manifest	VERB
ihlr-22948	211	12	in	in	ADP
ihlr-22948	211	13	infancy	infancy	NOUN
ihlr-22948	211	14	or	or	CCONJ
ihlr-22948	211	15	early	early	ADJ
ihlr-22948	211	16	childhood	childhood	NOUN
ihlr-22948	211	17	;	;	PUNCT
ihlr-22948	211	18	in	in	ADP
ihlr-22948	211	19	such	such	ADJ
ihlr-22948	211	20	cases	case	NOUN
ihlr-22948	211	21	,	,	PUNCT
ihlr-22948	211	22	parents	parent	NOUN
ihlr-22948	211	23	may	may	AUX
ihlr-22948	211	24	enter	enter	VERB
ihlr-22948	211	25	their	their	PRON
ihlr-22948	211	26	children	child	NOUN
ihlr-22948	211	27	into	into	ADP
ihlr-22948	211	28	the	the	DET
ihlr-22948	211	29	registry	registry	NOUN
ihlr-22948	211	30	without	without	ADP
ihlr-22948	211	31	the	the	DET
ihlr-22948	211	32	child	child	NOUN
ihlr-22948	211	33	’s	’s	PART
ihlr-22948	211	34	knowledge	knowledge	NOUN
ihlr-22948	211	35	or	or	CCONJ
ihlr-22948	211	36	consent	consent	NOUN
ihlr-22948	211	37	.	.	PUNCT
ihlr-22948	212	1	in	in	ADP
ihlr-22948	212	2	some	some	DET
ihlr-22948	212	3	cases	case	NOUN
ihlr-22948	212	4	,	,	PUNCT
ihlr-22948	212	5	longitudinal	longitudinal	ADJ
ihlr-22948	212	6	registries	registry	NOUN
ihlr-22948	212	7	may	may	AUX
ihlr-22948	212	8	require	require	VERB
ihlr-22948	212	9	re	re	NOUN
ihlr-22948	212	10	-	-	NOUN
ihlr-22948	212	11	consent	consent	NOUN
ihlr-22948	212	12	for	for	ADP
ihlr-22948	212	13	the	the	DET
ihlr-22948	212	14	40	40	NUM
ihlr-22948	212	15	.	.	PUNCT
ihlr-22948	213	1	agency	agency	NOUN
ihlr-22948	213	2	for	for	ADP
ihlr-22948	213	3	healthcare	healthcare	PROPN
ihlr-22948	213	4	research	research	PROPN
ihlr-22948	213	5	&	&	CCONJ
ihlr-22948	213	6	quality	quality	NOUN
ihlr-22948	213	7	,	,	PUNCT
ihlr-22948	213	8	supra	supra	ADJ
ihlr-22948	213	9	note	note	NOUN
ihlr-22948	213	10	1	1	NUM
ihlr-22948	213	11	.	.	NOUN
ihlr-22948	213	12	41	41	NUM
ihlr-22948	213	13	.	.	PUNCT
ihlr-22948	214	1	kátia	kátia	PROPN
ihlr-22948	214	2	regina	regina	PROPN
ihlr-22948	214	3	da	da	PROPN
ihlr-22948	214	4	silva	silva	PROPN
ihlr-22948	214	5	et	et	PROPN
ihlr-22948	214	6	al	al	PROPN
ihlr-22948	214	7	.	.	PROPN
ihlr-22948	214	8	,	,	PUNCT
ihlr-22948	214	9	correction	correction	NOUN
ihlr-22948	214	10	:	:	PUNCT
ihlr-22948	214	11	glocal	glocal	ADJ
ihlr-22948	214	12	clinical	clinical	ADJ
ihlr-22948	214	13	registries	registry	NOUN
ihlr-22948	214	14	:	:	PUNCT
ihlr-22948	214	15	pacemaker	pacemaker	NOUN
ihlr-22948	214	16	registry	registry	NOUN
ihlr-22948	214	17	design	design	NOUN
ihlr-22948	214	18	and	and	CCONJ
ihlr-22948	214	19	implementation	implementation	NOUN
ihlr-22948	214	20	for	for	ADP
ihlr-22948	214	21	global	global	ADJ
ihlr-22948	214	22	and	and	CCONJ
ihlr-22948	214	23	local	local	ADJ
ihlr-22948	214	24	integration	integration	NOUN
ihlr-22948	214	25	–	–	PUNCT
ihlr-22948	214	26	methodology	methodology	NOUN
ihlr-22948	214	27	and	and	CCONJ
ihlr-22948	214	28	case	case	NOUN
ihlr-22948	214	29	study	study	NOUN
ihlr-22948	214	30	,	,	PUNCT
ihlr-22948	214	31	plos	plos	PROPN
ihlr-22948	214	32	one	one	NUM
ihlr-22948	214	33	(	(	PUNCT
ihlr-22948	214	34	july	july	PROPN
ihlr-22948	214	35	25	25	NUM
ihlr-22948	214	36	,	,	PUNCT
ihlr-22948	214	37	2013	2013	NUM
ihlr-22948	214	38	)	)	PUNCT
ihlr-22948	214	39	,	,	PUNCT
ihlr-22948	214	40	https://journals.plos.org/plosone/article?id=10.1371/journal.pone	https://journals.plos.org/plosone/article?id=10.1371/journal.pone	PROPN
ihlr-22948	214	41	.	.	PUNCT
ihlr-22948	214	42	0071090	0071090	NUM
ihlr-22948	215	1	[	[	X
ihlr-22948	215	2	https://perma.cc/5lca-h3ap	https://perma.cc/5lca-h3ap	X
ihlr-22948	215	3	]	]	X
ihlr-22948	215	4	.	.	PUNCT
ihlr-22948	216	1	42	42	NUM
ihlr-22948	216	2	.	.	PUNCT
ihlr-22948	217	1	pompe	pompe	PROPN
ihlr-22948	217	2	disease	disease	PROPN
ihlr-22948	217	3	registry	registry	PROPN
ihlr-22948	217	4	,	,	PUNCT
ihlr-22948	217	5	u.s	u.s	PROPN
ihlr-22948	217	6	.	.	PROPN
ihlr-22948	217	7	nat	nat	PROPN
ihlr-22948	217	8	’	'	PUNCT
ihlr-22948	217	9	libr	libr	PROPN
ihlr-22948	217	10	.	.	PUNCT
ihlr-22948	218	1	med	med	PROPN
ihlr-22948	218	2	.	.	PUNCT
ihlr-22948	219	1	(	(	PUNCT
ihlr-22948	219	2	oct	oct	PROPN
ihlr-22948	219	3	.	.	PROPN
ihlr-22948	219	4	4	4	NUM
ihlr-22948	219	5	,	,	PUNCT
ihlr-22948	219	6	2005	2005	NUM
ihlr-22948	219	7	)	)	PUNCT
ihlr-22948	219	8	,	,	PUNCT
ihlr-22948	219	9	https://clinicaltrials.gov/	https://clinicaltrials.gov/	PROPN
ihlr-22948	219	10	ct2	ct2	PROPN
ihlr-22948	219	11	/	/	SYM
ihlr-22948	219	12	show	show	PROPN
ihlr-22948	219	13	/	/	SYM
ihlr-22948	219	14	nct00231400	nct00231400	NOUN
ihlr-22948	220	1	[	[	X
ihlr-22948	220	2	https://perma.cc/3fqh-bp9s	https://perma.cc/3fqh-bp9s	X
ihlr-22948	220	3	]	]	X
ihlr-22948	220	4	.	.	PUNCT
ihlr-22948	221	1	43	43	NUM
ihlr-22948	221	2	.	.	PUNCT
ihlr-22948	222	1	see	see	VERB
ihlr-22948	222	2	accelerate	accelerate	VERB
ihlr-22948	222	3	preeclampsia	preeclampsia	NOUN
ihlr-22948	222	4	research	research	NOUN
ihlr-22948	222	5	,	,	PUNCT
ihlr-22948	222	6	preeclampsia	preeclampsia	NOUN
ihlr-22948	222	7	registry	registry	NOUN
ihlr-22948	222	8	https://	https://	PROPN
ihlr-22948	222	9	preeclampsiaregistry.org/	preeclampsiaregistry.org/	PRON
ihlr-22948	223	1	[	[	X
ihlr-22948	223	2	https://perma.cc/y68w-gpgr	https://perma.cc/y68w-gpgr	PROPN
ihlr-22948	223	3	]	]	X
ihlr-22948	223	4	(	(	PUNCT
ihlr-22948	223	5	registry	registry	NOUN
ihlr-22948	223	6	participants	participant	NOUN
ihlr-22948	223	7	have	have	VERB
ihlr-22948	223	8	the	the	DET
ihlr-22948	223	9	option	option	NOUN
ihlr-22948	223	10	of	of	ADP
ihlr-22948	223	11	uploading	upload	VERB
ihlr-22948	223	12	themselves	themselves	PRON
ihlr-22948	223	13	actual	actual	ADJ
ihlr-22948	223	14	information	information	NOUN
ihlr-22948	223	15	into	into	ADP
ihlr-22948	223	16	their	their	PRON
ihlr-22948	223	17	online	online	ADJ
ihlr-22948	223	18	profile	profile	NOUN
ihlr-22948	223	19	that	that	SCONJ
ihlr-22948	223	20	they	they	PRON
ihlr-22948	223	21	can	can	AUX
ihlr-22948	223	22	edit	edit	VERB
ihlr-22948	223	23	and	and	CCONJ
ihlr-22948	223	24	use	use	VERB
ihlr-22948	223	25	,	,	PUNCT
ihlr-22948	223	26	but	but	CCONJ
ihlr-22948	223	27	that	that	PRON
ihlr-22948	223	28	is	be	AUX
ihlr-22948	223	29	also	also	ADV
ihlr-22948	223	30	used	use	VERB
ihlr-22948	223	31	by	by	ADP
ihlr-22948	223	32	the	the	DET
ihlr-22948	223	33	registry	registry	NOUN
ihlr-22948	223	34	)	)	PUNCT
ihlr-22948	223	35	.	.	PUNCT
ihlr-22948	224	1	44	44	NUM
ihlr-22948	224	2	.	.	PUNCT
ihlr-22948	224	3	world	world	PROPN
ihlr-22948	224	4	trade	trade	PROPN
ihlr-22948	224	5	center	center	PROPN
ihlr-22948	224	6	health	health	NOUN
ihlr-22948	224	7	registry	registry	NOUN
ihlr-22948	224	8	,	,	PUNCT
ihlr-22948	224	9	nyc	nyc	PROPN
ihlr-22948	224	10	9/11	9/11	PROPN
ihlr-22948	224	11	health	health	NOUN
ihlr-22948	224	12	,	,	PUNCT
ihlr-22948	224	13	https://www1.nyc.gov/site/	https://www1.nyc.gov/site/	ADV
ihlr-22948	224	14	911health	911health	PROPN
ihlr-22948	224	15	/	/	SYM
ihlr-22948	224	16	about	about	ADP
ihlr-22948	224	17	/	/	SYM
ihlr-22948	224	18	wtc	wtc	ADJ
ihlr-22948	224	19	-	-	PUNCT
ihlr-22948	224	20	health	health	NOUN
ihlr-22948	224	21	-	-	PUNCT
ihlr-22948	224	22	registry.page	registry.page	NOUN
ihlr-22948	225	1	[	[	X
ihlr-22948	225	2	https://perma.cc/9xup-nspc	https://perma.cc/9xup-nspc	X
ihlr-22948	225	3	]	]	X
ihlr-22948	225	4	.	.	PUNCT
ihlr-22948	226	1	45	45	NUM
ihlr-22948	226	2	.	.	PUNCT
ihlr-22948	227	1	houston	houston	PROPN
ihlr-22948	227	2	partners	partner	NOUN
ihlr-22948	227	3	announce	announce	VERB
ihlr-22948	227	4	launch	launch	NOUN
ihlr-22948	227	5	of	of	ADP
ihlr-22948	227	6	post	post	ADJ
ihlr-22948	227	7	-	-	ADJ
ihlr-22948	227	8	harvey	harvey	NOUN
ihlr-22948	227	9	health	health	PROPN
ihlr-22948	227	10	registry	registry	PROPN
ihlr-22948	227	11	,	,	PUNCT
ihlr-22948	227	12	envtl	envtl	PROPN
ihlr-22948	227	13	.	.	PUNCT
ihlr-22948	228	1	defense	defense	NOUN
ihlr-22948	228	2	fund	fund	PROPN
ihlr-22948	228	3	(	(	PUNCT
ihlr-22948	228	4	apr	apr	PROPN
ihlr-22948	228	5	.	.	PROPN
ihlr-22948	228	6	25	25	NUM
ihlr-22948	228	7	,	,	PUNCT
ihlr-22948	228	8	2018	2018	NUM
ihlr-22948	228	9	)	)	PUNCT
ihlr-22948	228	10	,	,	PUNCT
ihlr-22948	228	11	https://www.edf.org/media/houston-partners-announce-launch-post-harveyhealth-registry	https://www.edf.org/media/houston-partners-announce-launch-post-harveyhealth-registry	X
ihlr-22948	229	1	[	[	X
ihlr-22948	229	2	https://perma.cc/9yee-9kr4	https://perma.cc/9yee-9kr4	X
ihlr-22948	229	3	]	]	X
ihlr-22948	229	4	.	.	PUNCT
ihlr-22948	230	1	52	52	NUM
ihlr-22948	230	2	indiana	indiana	PROPN
ihlr-22948	230	3	health	health	PROPN
ihlr-22948	230	4	law	law	NOUN
ihlr-22948	230	5	review	review	NOUN
ihlr-22948	230	6	[	[	X
ihlr-22948	230	7	vol	vol	NOUN
ihlr-22948	230	8	.	.	PUNCT
ihlr-22948	231	1	16:43	16:43	NUM
ihlr-22948	231	2	continued	continue	VERB
ihlr-22948	231	3	participation	participation	NOUN
ihlr-22948	231	4	of	of	ADP
ihlr-22948	231	5	children	child	NOUN
ihlr-22948	231	6	in	in	ADP
ihlr-22948	231	7	the	the	DET
ihlr-22948	231	8	registry	registry	NOUN
ihlr-22948	231	9	after	after	SCONJ
ihlr-22948	231	10	they	they	PRON
ihlr-22948	231	11	reach	reach	VERB
ihlr-22948	231	12	adulthood.46	adulthood.46	NOUN
ihlr-22948	231	13	registries	registry	NOUN
ihlr-22948	231	14	that	that	PRON
ihlr-22948	231	15	function	function	VERB
ihlr-22948	231	16	to	to	PART
ihlr-22948	231	17	identify	identify	VERB
ihlr-22948	231	18	patients	patient	NOUN
ihlr-22948	231	19	who	who	PRON
ihlr-22948	231	20	may	may	AUX
ihlr-22948	231	21	be	be	AUX
ihlr-22948	231	22	interested	interested	ADJ
ihlr-22948	231	23	in	in	ADP
ihlr-22948	231	24	participating	participate	VERB
ihlr-22948	231	25	in	in	ADP
ihlr-22948	231	26	clinical	clinical	ADJ
ihlr-22948	231	27	research	research	NOUN
ihlr-22948	231	28	will	will	AUX
ihlr-22948	231	29	typically	typically	ADV
ihlr-22948	231	30	require	require	VERB
ihlr-22948	231	31	consent	consent	NOUN
ihlr-22948	231	32	to	to	ADP
ihlr-22948	231	33	participation	participation	NOUN
ihlr-22948	231	34	on	on	ADP
ihlr-22948	231	35	a	a	DET
ihlr-22948	231	36	study	study	NOUN
ihlr-22948	231	37	-	-	PUNCT
ihlr-22948	231	38	bystudy	bystudy	NOUN
ihlr-22948	231	39	basis	basis	NOUN
ihlr-22948	231	40	.	.	PUNCT
ihlr-22948	232	1	when	when	SCONJ
ihlr-22948	232	2	registries	registry	NOUN
ihlr-22948	232	3	are	be	AUX
ihlr-22948	232	4	assembled	assemble	VERB
ihlr-22948	232	5	from	from	ADP
ihlr-22948	232	6	data	datum	NOUN
ihlr-22948	232	7	submitted	submit	VERB
ihlr-22948	232	8	by	by	ADP
ihlr-22948	232	9	patients	patient	NOUN
ihlr-22948	232	10	themselves	themselves	PRON
ihlr-22948	232	11	,	,	PUNCT
ihlr-22948	232	12	patients	patient	NOUN
ihlr-22948	232	13	will	will	AUX
ihlr-22948	232	14	presumably	presumably	ADV
ihlr-22948	232	15	be	be	AUX
ihlr-22948	232	16	aware	aware	ADJ
ihlr-22948	232	17	of	of	ADP
ihlr-22948	232	18	their	their	PRON
ihlr-22948	232	19	involvement	involvement	NOUN
ihlr-22948	232	20	in	in	ADP
ihlr-22948	232	21	the	the	DET
ihlr-22948	232	22	registry	registry	NOUN
ihlr-22948	232	23	and	and	CCONJ
ihlr-22948	232	24	the	the	DET
ihlr-22948	232	25	information	information	NOUN
ihlr-22948	232	26	they	they	PRON
ihlr-22948	232	27	have	have	AUX
ihlr-22948	232	28	submitted	submit	VERB
ihlr-22948	232	29	.	.	PUNCT
ihlr-22948	233	1	other	other	ADJ
ihlr-22948	233	2	registries	registry	NOUN
ihlr-22948	233	3	may	may	AUX
ihlr-22948	233	4	acquire	acquire	VERB
ihlr-22948	233	5	data	datum	NOUN
ihlr-22948	233	6	without	without	ADP
ihlr-22948	233	7	either	either	CCONJ
ihlr-22948	233	8	the	the	DET
ihlr-22948	233	9	consent	consent	NOUN
ihlr-22948	233	10	or	or	CCONJ
ihlr-22948	233	11	the	the	DET
ihlr-22948	233	12	knowledge	knowledge	NOUN
ihlr-22948	233	13	of	of	ADP
ihlr-22948	233	14	the	the	DET
ihlr-22948	233	15	individuals	individual	NOUN
ihlr-22948	233	16	from	from	ADP
ihlr-22948	233	17	which	which	PRON
ihlr-22948	233	18	registry	registry	NOUN
ihlr-22948	233	19	data	data	NOUN
ihlr-22948	233	20	is	be	AUX
ihlr-22948	233	21	drawn	draw	VERB
ihlr-22948	233	22	.	.	PUNCT
ihlr-22948	234	1	as	as	SCONJ
ihlr-22948	234	2	described	describe	VERB
ihlr-22948	234	3	below	below	ADV
ihlr-22948	234	4	,	,	PUNCT
ihlr-22948	234	5	data	datum	NOUN
ihlr-22948	234	6	that	that	PRON
ihlr-22948	234	7	has	have	AUX
ihlr-22948	234	8	been	be	AUX
ihlr-22948	234	9	de	de	VERB
ihlr-22948	234	10	-	-	VERB
ihlr-22948	234	11	identified	identify	VERB
ihlr-22948	234	12	are	be	AUX
ihlr-22948	234	13	not	not	PART
ihlr-22948	234	14	considered	consider	VERB
ihlr-22948	234	15	individual	individual	ADJ
ihlr-22948	234	16	data	datum	NOUN
ihlr-22948	234	17	for	for	ADP
ihlr-22948	234	18	regulatory	regulatory	ADJ
ihlr-22948	234	19	purposes	purpose	NOUN
ihlr-22948	234	20	.	.	PUNCT
ihlr-22948	235	1	inclusion	inclusion	NOUN
ihlr-22948	235	2	of	of	ADP
ihlr-22948	235	3	identifiable	identifiable	ADJ
ihlr-22948	235	4	data	datum	NOUN
ihlr-22948	235	5	in	in	ADP
ihlr-22948	235	6	registries	registry	NOUN
ihlr-22948	235	7	maintained	maintain	VERB
ihlr-22948	235	8	by	by	ADP
ihlr-22948	235	9	public	public	ADJ
ihlr-22948	235	10	health	health	NOUN
ihlr-22948	235	11	,	,	PUNCT
ihlr-22948	235	12	moreover	moreover	ADV
ihlr-22948	235	13	,	,	PUNCT
ihlr-22948	235	14	may	may	AUX
ihlr-22948	235	15	occur	occur	VERB
ihlr-22948	235	16	without	without	ADP
ihlr-22948	235	17	either	either	CCONJ
ihlr-22948	235	18	the	the	DET
ihlr-22948	235	19	consent	consent	NOUN
ihlr-22948	235	20	or	or	CCONJ
ihlr-22948	235	21	even	even	ADV
ihlr-22948	235	22	the	the	DET
ihlr-22948	235	23	knowledge	knowledge	NOUN
ihlr-22948	235	24	of	of	ADP
ihlr-22948	235	25	the	the	DET
ihlr-22948	235	26	patient	patient	NOUN
ihlr-22948	235	27	or	or	CCONJ
ihlr-22948	235	28	his	his	PRON
ihlr-22948	235	29	or	or	CCONJ
ihlr-22948	235	30	her	her	PRON
ihlr-22948	235	31	decision	decision	NOUN
ihlr-22948	235	32	-	-	PUNCT
ihlr-22948	235	33	maker	maker	NOUN
ihlr-22948	235	34	.	.	PUNCT
ihlr-22948	236	1	while	while	SCONJ
ihlr-22948	236	2	the	the	DET
ihlr-22948	236	3	scope	scope	NOUN
ihlr-22948	236	4	and	and	CCONJ
ihlr-22948	236	5	geographic	geographic	ADJ
ihlr-22948	236	6	reach	reach	NOUN
ihlr-22948	236	7	of	of	ADP
ihlr-22948	236	8	some	some	DET
ihlr-22948	236	9	registries	registry	NOUN
ihlr-22948	236	10	may	may	AUX
ihlr-22948	236	11	remain	remain	VERB
ihlr-22948	236	12	confined	confine	VERB
ihlr-22948	236	13	to	to	ADP
ihlr-22948	236	14	a	a	DET
ihlr-22948	236	15	region	region	NOUN
ihlr-22948	236	16	of	of	ADP
ihlr-22948	236	17	the	the	DET
ihlr-22948	236	18	country	country	NOUN
ihlr-22948	236	19	,	,	PUNCT
ihlr-22948	236	20	an	an	DET
ihlr-22948	236	21	increasing	increase	VERB
ihlr-22948	236	22	number	number	NOUN
ihlr-22948	236	23	of	of	ADP
ihlr-22948	236	24	registries	registry	NOUN
ihlr-22948	236	25	not	not	PART
ihlr-22948	236	26	only	only	ADV
ihlr-22948	236	27	include	include	VERB
ihlr-22948	236	28	data	datum	NOUN
ihlr-22948	236	29	about	about	ADP
ihlr-22948	236	30	patients	patient	NOUN
ihlr-22948	236	31	treated	treat	VERB
ihlr-22948	236	32	in	in	ADP
ihlr-22948	236	33	the	the	DET
ihlr-22948	236	34	united	united	PROPN
ihlr-22948	236	35	states	states	PROPN
ihlr-22948	236	36	,	,	PUNCT
ihlr-22948	236	37	but	but	CCONJ
ihlr-22948	236	38	also	also	ADV
ihlr-22948	236	39	data	datum	NOUN
ihlr-22948	236	40	from	from	ADP
ihlr-22948	236	41	patients	patient	NOUN
ihlr-22948	236	42	scattered	scatter	VERB
ihlr-22948	236	43	across	across	ADP
ihlr-22948	236	44	the	the	DET
ihlr-22948	236	45	globe	globe	NOUN
ihlr-22948	236	46	.	.	PUNCT
ihlr-22948	237	1	when	when	SCONJ
ihlr-22948	237	2	diseases	disease	NOUN
ihlr-22948	237	3	are	be	AUX
ihlr-22948	237	4	quite	quite	ADV
ihlr-22948	237	5	rare	rare	ADJ
ihlr-22948	237	6	—	—	PUNCT
ihlr-22948	237	7	as	as	ADP
ihlr-22948	237	8	many	many	ADJ
ihlr-22948	237	9	genetic	genetic	ADJ
ihlr-22948	237	10	disorders	disorder	NOUN
ihlr-22948	237	11	may	may	AUX
ihlr-22948	237	12	be	be	AUX
ihlr-22948	237	13	—	—	PUNCT
ihlr-22948	237	14	larger	large	ADJ
ihlr-22948	237	15	national	national	ADJ
ihlr-22948	237	16	or	or	CCONJ
ihlr-22948	237	17	international	international	ADJ
ihlr-22948	237	18	inclusion	inclusion	NOUN
ihlr-22948	237	19	criteria	criterion	NOUN
ihlr-22948	237	20	may	may	AUX
ihlr-22948	237	21	be	be	AUX
ihlr-22948	237	22	necessary	necessary	ADJ
ihlr-22948	237	23	to	to	PART
ihlr-22948	237	24	acquire	acquire	VERB
ihlr-22948	237	25	sufficient	sufficient	ADJ
ihlr-22948	237	26	clinical	clinical	ADJ
ihlr-22948	237	27	data	datum	NOUN
ihlr-22948	237	28	to	to	PART
ihlr-22948	237	29	be	be	AUX
ihlr-22948	237	30	informative	informative	ADJ
ihlr-22948	237	31	about	about	ADP
ihlr-22948	237	32	the	the	DET
ihlr-22948	237	33	prevalence	prevalence	NOUN
ihlr-22948	237	34	and	and	CCONJ
ihlr-22948	237	35	natural	natural	ADJ
ihlr-22948	237	36	history	history	NOUN
ihlr-22948	237	37	of	of	ADP
ihlr-22948	237	38	the	the	DET
ihlr-22948	237	39	disease	disease	NOUN
ihlr-22948	237	40	or	or	CCONJ
ihlr-22948	237	41	to	to	PART
ihlr-22948	237	42	facilitate	facilitate	VERB
ihlr-22948	237	43	translational	translational	ADJ
ihlr-22948	237	44	research.47	research.47	PROPN
ihlr-22948	237	45	the	the	DET
ihlr-22948	237	46	source	source	NOUN
ihlr-22948	237	47	of	of	ADP
ihlr-22948	237	48	registry	registry	NOUN
ihlr-22948	237	49	data	datum	NOUN
ihlr-22948	237	50	is	be	AUX
ihlr-22948	237	51	particularly	particularly	ADV
ihlr-22948	237	52	important	important	ADJ
ihlr-22948	237	53	to	to	ADP
ihlr-22948	237	54	how	how	SCONJ
ihlr-22948	237	55	the	the	DET
ihlr-22948	237	56	data	datum	NOUN
ihlr-22948	237	57	are	be	AUX
ihlr-22948	237	58	protected	protect	VERB
ihlr-22948	237	59	legally	legally	ADV
ihlr-22948	237	60	in	in	ADP
ihlr-22948	237	61	the	the	DET
ihlr-22948	237	62	u.s	u.s	PROPN
ihlr-22948	237	63	.	.	PROPN
ihlr-22948	237	64	as	as	SCONJ
ihlr-22948	237	65	discussed	discuss	VERB
ihlr-22948	237	66	below	below	ADV
ihlr-22948	237	67	,	,	PUNCT
ihlr-22948	237	68	registry	registry	NOUN
ihlr-22948	237	69	data	datum	NOUN
ihlr-22948	237	70	obtained	obtain	VERB
ihlr-22948	237	71	from	from	ADP
ihlr-22948	237	72	patient	patient	ADJ
ihlr-22948	237	73	medical	medical	ADJ
ihlr-22948	237	74	records	record	NOUN
ihlr-22948	237	75	and	and	CCONJ
ihlr-22948	237	76	maintained	maintain	VERB
ihlr-22948	237	77	in	in	ADP
ihlr-22948	237	78	entities	entity	NOUN
ihlr-22948	237	79	covered	cover	VERB
ihlr-22948	237	80	by	by	ADP
ihlr-22948	237	81	the	the	DET
ihlr-22948	237	82	u.s	u.s	PROPN
ihlr-22948	237	83	.	.	PROPN
ihlr-22948	237	84	privacy	privacy	NOUN
ihlr-22948	237	85	and	and	CCONJ
ihlr-22948	237	86	security	security	NOUN
ihlr-22948	237	87	rules	rule	NOUN
ihlr-22948	237	88	protecting	protect	VERB
ihlr-22948	237	89	health	health	NOUN
ihlr-22948	237	90	information	information	NOUN
ihlr-22948	237	91	receives	receive	VERB
ihlr-22948	237	92	quite	quite	ADV
ihlr-22948	237	93	comprehensive	comprehensive	ADJ
ihlr-22948	237	94	protection	protection	NOUN
ihlr-22948	237	95	against	against	ADP
ihlr-22948	237	96	misuse	misuse	NOUN
ihlr-22948	237	97	.	.	PUNCT
ihlr-22948	238	1	once	once	SCONJ
ihlr-22948	238	2	information	information	NOUN
ihlr-22948	238	3	leaves	leave	VERB
ihlr-22948	238	4	the	the	DET
ihlr-22948	238	5	entities	entity	NOUN
ihlr-22948	238	6	covered	cover	VERB
ihlr-22948	238	7	by	by	ADP
ihlr-22948	238	8	these	these	DET
ihlr-22948	238	9	rules	rule	NOUN
ihlr-22948	238	10	,	,	PUNCT
ihlr-22948	238	11	however	however	ADV
ihlr-22948	238	12	,	,	PUNCT
ihlr-22948	238	13	it	it	PRON
ihlr-22948	238	14	receives	receive	VERB
ihlr-22948	238	15	far	far	ADV
ihlr-22948	238	16	less	less	ADJ
ihlr-22948	238	17	protection	protection	NOUN
ihlr-22948	238	18	.	.	PUNCT
ihlr-22948	239	1	information	information	NOUN
ihlr-22948	239	2	downloaded	download	VERB
ihlr-22948	239	3	from	from	ADP
ihlr-22948	239	4	protected	protect	VERB
ihlr-22948	239	5	systems	system	NOUN
ihlr-22948	239	6	may	may	AUX
ihlr-22948	239	7	lose	lose	VERB
ihlr-22948	239	8	the	the	DET
ihlr-22948	239	9	protections	protection	NOUN
ihlr-22948	239	10	to	to	PART
ihlr-22948	239	11	which	which	PRON
ihlr-22948	239	12	it	it	PRON
ihlr-22948	239	13	was	be	AUX
ihlr-22948	239	14	initially	initially	ADV
ihlr-22948	239	15	subject	subject	ADJ
ihlr-22948	239	16	,	,	PUNCT
ihlr-22948	239	17	and	and	CCONJ
ihlr-22948	239	18	information	information	NOUN
ihlr-22948	239	19	in	in	ADP
ihlr-22948	239	20	registries	registry	NOUN
ihlr-22948	239	21	collected	collect	VERB
ihlr-22948	239	22	from	from	ADP
ihlr-22948	239	23	patients	patient	NOUN
ihlr-22948	239	24	or	or	CCONJ
ihlr-22948	239	25	other	other	ADJ
ihlr-22948	239	26	sources	source	NOUN
ihlr-22948	239	27	will	will	AUX
ihlr-22948	239	28	never	never	ADV
ihlr-22948	239	29	have	have	AUX
ihlr-22948	239	30	had	have	VERB
ihlr-22948	239	31	that	that	DET
ihlr-22948	239	32	protection	protection	NOUN
ihlr-22948	239	33	.	.	PUNCT
ihlr-22948	240	1	information	information	NOUN
ihlr-22948	240	2	entered	enter	VERB
ihlr-22948	240	3	by	by	ADP
ihlr-22948	240	4	patients	patient	NOUN
ihlr-22948	240	5	themselves	themselves	PRON
ihlr-22948	240	6	or	or	CCONJ
ihlr-22948	240	7	drawn	draw	VERB
ihlr-22948	240	8	from	from	ADP
ihlr-22948	240	9	non	non	ADJ
ihlr-22948	240	10	-	-	ADJ
ihlr-22948	240	11	health	health	ADJ
ihlr-22948	240	12	care	care	NOUN
ihlr-22948	240	13	sources	source	NOUN
ihlr-22948	240	14	is	be	AUX
ihlr-22948	240	15	largely	largely	ADV
ihlr-22948	240	16	unprotected	unprotected	ADJ
ihlr-22948	240	17	by	by	ADP
ihlr-22948	240	18	federal	federal	ADJ
ihlr-22948	240	19	law	law	NOUN
ihlr-22948	240	20	.	.	PUNCT
ihlr-22948	241	1	international	international	ADJ
ihlr-22948	241	2	data	data	PROPN
ihlr-22948	241	3	protection	protection	NOUN
ihlr-22948	241	4	standards	standard	NOUN
ihlr-22948	241	5	,	,	PUNCT
ihlr-22948	241	6	and	and	CCONJ
ihlr-22948	241	7	especially	especially	ADV
ihlr-22948	241	8	the	the	DET
ihlr-22948	241	9	european	european	PROPN
ihlr-22948	241	10	union	union	PROPN
ihlr-22948	241	11	data	data	PROPN
ihlr-22948	241	12	protection	protection	NOUN
ihlr-22948	241	13	regulation,48	regulation,48	NOUN
ihlr-22948	241	14	come	come	VERB
ihlr-22948	241	15	into	into	ADP
ihlr-22948	241	16	play	play	NOUN
ihlr-22948	241	17	when	when	SCONJ
ihlr-22948	241	18	data	datum	NOUN
ihlr-22948	241	19	crosses	cross	VERB
ihlr-22948	241	20	national	national	ADJ
ihlr-22948	241	21	borders	border	NOUN
ihlr-22948	241	22	.	.	PUNCT
ihlr-22948	242	1	the	the	DET
ihlr-22948	242	2	european	european	ADJ
ihlr-22948	242	3	regulation	regulation	NOUN
ihlr-22948	242	4	is	be	AUX
ihlr-22948	242	5	far	far	ADV
ihlr-22948	242	6	more	more	ADV
ihlr-22948	242	7	protective	protective	ADJ
ihlr-22948	242	8	that	that	SCONJ
ihlr-22948	242	9	u.s	u.s	PROPN
ihlr-22948	242	10	.	.	PROPN
ihlr-22948	242	11	privacy	privacy	NOUN
ihlr-22948	242	12	law	law	NOUN
ihlr-22948	242	13	,	,	PUNCT
ihlr-22948	242	14	and	and	CCONJ
ihlr-22948	242	15	it	it	PRON
ihlr-22948	242	16	remains	remain	VERB
ihlr-22948	242	17	to	to	PART
ihlr-22948	242	18	be	be	AUX
ihlr-22948	242	19	seen	see	VERB
ihlr-22948	242	20	whether	whether	SCONJ
ihlr-22948	242	21	it	it	PRON
ihlr-22948	242	22	will	will	AUX
ihlr-22948	242	23	pose	pose	VERB
ihlr-22948	242	24	difficulties	difficulty	NOUN
ihlr-22948	242	25	for	for	ADP
ihlr-22948	242	26	registries	registry	NOUN
ihlr-22948	242	27	transferring	transfer	VERB
ihlr-22948	242	28	information	information	NOUN
ihlr-22948	242	29	between	between	ADP
ihlr-22948	242	30	jurisdictions	jurisdiction	NOUN
ihlr-22948	242	31	.	.	PUNCT
ihlr-22948	243	1	registries	registry	NOUN
ihlr-22948	243	2	also	also	ADV
ihlr-22948	243	3	vary	vary	VERB
ihlr-22948	243	4	widely	widely	ADV
ihlr-22948	243	5	in	in	ADP
ihlr-22948	243	6	the	the	DET
ihlr-22948	243	7	sensitivity	sensitivity	NOUN
ihlr-22948	243	8	of	of	ADP
ihlr-22948	243	9	the	the	DET
ihlr-22948	243	10	information	information	NOUN
ihlr-22948	243	11	they	they	PRON
ihlr-22948	243	12	contain	contain	VERB
ihlr-22948	243	13	.	.	PUNCT
ihlr-22948	244	1	those	those	DET
ihlr-22948	244	2	registries	registry	NOUN
ihlr-22948	244	3	that	that	PRON
ihlr-22948	244	4	serve	serve	VERB
ihlr-22948	244	5	primarily	primarily	ADV
ihlr-22948	244	6	as	as	ADP
ihlr-22948	244	7	a	a	DET
ihlr-22948	244	8	means	mean	NOUN
ihlr-22948	244	9	for	for	ADP
ihlr-22948	244	10	identifying	identify	VERB
ihlr-22948	244	11	and	and	CCONJ
ihlr-22948	244	12	connecting	connect	VERB
ihlr-22948	244	13	people	people	NOUN
ihlr-22948	244	14	with	with	ADP
ihlr-22948	244	15	particular	particular	ADJ
ihlr-22948	244	16	disease	disease	NOUN
ihlr-22948	244	17	conditions	condition	NOUN
ihlr-22948	244	18	may	may	AUX
ihlr-22948	244	19	contain	contain	VERB
ihlr-22948	244	20	little	little	ADJ
ihlr-22948	244	21	sensitive	sensitive	ADJ
ihlr-22948	244	22	information	information	NOUN
ihlr-22948	244	23	,	,	PUNCT
ihlr-22948	244	24	46	46	NUM
ihlr-22948	244	25	.	.	PUNCT
ihlr-22948	245	1	leslie	leslie	PROPN
ihlr-22948	245	2	p.	p.	PROPN
ihlr-22948	245	3	francis	francis	PROPN
ihlr-22948	245	4	,	,	PUNCT
ihlr-22948	245	5	patient	patient	ADJ
ihlr-22948	245	6	registries	registry	NOUN
ihlr-22948	245	7	:	:	PUNCT
ihlr-22948	245	8	patient	patient	ADJ
ihlr-22948	245	9	consent	consent	NOUN
ihlr-22948	245	10	when	when	SCONJ
ihlr-22948	245	11	children	child	NOUN
ihlr-22948	245	12	become	become	VERB
ihlr-22948	245	13	adults	adult	NOUN
ihlr-22948	245	14	,	,	PUNCT
ihlr-22948	245	15	7	7	NUM
ihlr-22948	245	16	saint	saint	PROPN
ihlr-22948	245	17	louis	louis	PROPN
ihlr-22948	245	18	u.	u.	PROPN
ihlr-22948	245	19	j.	j.	PROPN
ihlr-22948	245	20	of	of	ADP
ihlr-22948	245	21	health	health	PROPN
ihlr-22948	245	22	l.	l.	PROPN
ihlr-22948	245	23	&	&	CCONJ
ihlr-22948	245	24	pol’y	pol’y	NOUN
ihlr-22948	245	25	389	389	NUM
ihlr-22948	245	26	-	-	SYM
ihlr-22948	245	27	404	404	NUM
ihlr-22948	245	28	(	(	PUNCT
ihlr-22948	245	29	2014	2014	NUM
ihlr-22948	245	30	)	)	PUNCT
ihlr-22948	245	31	(	(	PUNCT
ihlr-22948	245	32	adult	adult	NOUN
ihlr-22948	245	33	consent	consent	NOUN
ihlr-22948	245	34	to	to	ADP
ihlr-22948	245	35	continued	continue	VERB
ihlr-22948	245	36	participation	participation	NOUN
ihlr-22948	245	37	in	in	ADP
ihlr-22948	245	38	patient	patient	ADJ
ihlr-22948	245	39	registries	registry	NOUN
ihlr-22948	245	40	)	)	PUNCT
ihlr-22948	245	41	.	.	PUNCT
ihlr-22948	246	1	47	47	NUM
ihlr-22948	246	2	.	.	PUNCT
ihlr-22948	247	1	e.g.	e.g.	ADV
ihlr-22948	247	2	,	,	PUNCT
ihlr-22948	247	3	david	david	PROPN
ihlr-22948	247	4	m.	m.	PROPN
ihlr-22948	247	5	ng	ng	PROPN
ihlr-22948	247	6	et	et	PROPN
ihlr-22948	247	7	al	al	PROPN
ihlr-22948	247	8	.	.	PROPN
ihlr-22948	247	9	,	,	PUNCT
ihlr-22948	247	10	the	the	DET
ihlr-22948	247	11	role	role	NOUN
ihlr-22948	247	12	of	of	ADP
ihlr-22948	247	13	patient	patient	ADJ
ihlr-22948	247	14	registries	registry	NOUN
ihlr-22948	247	15	for	for	ADP
ihlr-22948	247	16	rare	rare	ADJ
ihlr-22948	247	17	genetic	genetic	ADJ
ihlr-22948	247	18	lipid	lipid	NOUN
ihlr-22948	247	19	disorders	disorder	NOUN
ihlr-22948	247	20	,	,	PUNCT
ihlr-22948	247	21	29	29	NUM
ihlr-22948	247	22	current	current	ADJ
ihlr-22948	247	23	opinion	opinion	NOUN
ihlr-22948	247	24	lipidology	lipidology	NOUN
ihlr-22948	247	25	156	156	NUM
ihlr-22948	247	26	,	,	PUNCT
ihlr-22948	247	27	156	156	NUM
ihlr-22948	247	28	-	-	SYM
ihlr-22948	247	29	162	162	NUM
ihlr-22948	247	30	(	(	PUNCT
ihlr-22948	247	31	2018	2018	NUM
ihlr-22948	247	32	)	)	PUNCT
ihlr-22948	247	33	.	.	PUNCT
ihlr-22948	248	1	48	48	NUM
ihlr-22948	248	2	.	.	PUNCT
ihlr-22948	249	1	commission	commission	PROPN
ihlr-22948	249	2	regulation	regulation	PROPN
ihlr-22948	249	3	2016/679	2016/679	NOUN
ihlr-22948	249	4	,	,	PUNCT
ihlr-22948	249	5	2016	2016	NUM
ihlr-22948	249	6	o.j	o.j	PROPN
ihlr-22948	249	7	.	.	PUNCT
ihlr-22948	249	8	(	(	PUNCT
ihlr-22948	249	9	l	l	NOUN
ihlr-22948	249	10	119/1	119/1	NUM
ihlr-22948	249	11	)	)	PUNCT
ihlr-22948	249	12	(	(	PUNCT
ihlr-22948	249	13	eu	eu	NOUN
ihlr-22948	249	14	)	)	PUNCT
ihlr-22948	249	15	(	(	PUNCT
ihlr-22948	249	16	regulation	regulation	NOUN
ihlr-22948	249	17	on	on	ADP
ihlr-22948	249	18	the	the	DET
ihlr-22948	249	19	protection	protection	NOUN
ihlr-22948	249	20	of	of	ADP
ihlr-22948	249	21	natural	natural	ADJ
ihlr-22948	249	22	persons	person	NOUN
ihlr-22948	249	23	with	with	ADP
ihlr-22948	249	24	regard	regard	NOUN
ihlr-22948	249	25	to	to	ADP
ihlr-22948	249	26	the	the	DET
ihlr-22948	249	27	processing	processing	NOUN
ihlr-22948	249	28	of	of	ADP
ihlr-22948	249	29	personal	personal	ADJ
ihlr-22948	249	30	data	datum	NOUN
ihlr-22948	249	31	and	and	CCONJ
ihlr-22948	249	32	on	on	ADP
ihlr-22948	249	33	the	the	DET
ihlr-22948	249	34	free	free	ADJ
ihlr-22948	249	35	movement	movement	NOUN
ihlr-22948	249	36	of	of	ADP
ihlr-22948	249	37	such	such	ADJ
ihlr-22948	249	38	data	datum	NOUN
ihlr-22948	249	39	,	,	PUNCT
ihlr-22948	249	40	and	and	CCONJ
ihlr-22948	249	41	repealing	repeal	VERB
ihlr-22948	249	42	directive	directive	NOUN
ihlr-22948	249	43	95/46	95/46	NUM
ihlr-22948	249	44	/	/	SYM
ihlr-22948	249	45	ec	ec	PROPN
ihlr-22948	249	46	(	(	PUNCT
ihlr-22948	249	47	general	general	ADJ
ihlr-22948	249	48	data	datum	NOUN
ihlr-22948	249	49	protection	protection	PROPN
ihlr-22948	249	50	regulation	regulation	NOUN
ihlr-22948	249	51	)	)	PUNCT
ihlr-22948	249	52	)	)	PUNCT
ihlr-22948	249	53	.	.	PUNCT
ihlr-22948	250	1	2018	2018	NUM
ihlr-22948	250	2	]	]	PUNCT
ihlr-22948	250	3	patient	patient	ADJ
ihlr-22948	250	4	registries	registry	NOUN
ihlr-22948	250	5	and	and	CCONJ
ihlr-22948	250	6	their	their	PRON
ihlr-22948	250	7	governance	governance	NOUN
ihlr-22948	250	8	53	53	NUM
ihlr-22948	250	9	although	although	SCONJ
ihlr-22948	250	10	even	even	ADV
ihlr-22948	250	11	contact	contact	NOUN
ihlr-22948	250	12	information	information	NOUN
ihlr-22948	250	13	may	may	AUX
ihlr-22948	250	14	be	be	AUX
ihlr-22948	250	15	troubling	troubling	ADJ
ihlr-22948	250	16	if	if	SCONJ
ihlr-22948	250	17	it	it	PRON
ihlr-22948	250	18	enables	enable	VERB
ihlr-22948	250	19	people	people	NOUN
ihlr-22948	250	20	to	to	PART
ihlr-22948	250	21	be	be	AUX
ihlr-22948	250	22	traced	trace	VERB
ihlr-22948	250	23	and	and	CCONJ
ihlr-22948	250	24	harmed.49	harmed.49	ADP
ihlr-22948	250	25	some	some	DET
ihlr-22948	250	26	registries	registry	NOUN
ihlr-22948	250	27	collect	collect	VERB
ihlr-22948	250	28	contact	contact	NOUN
ihlr-22948	250	29	information	information	NOUN
ihlr-22948	250	30	only	only	ADV
ihlr-22948	250	31	and	and	CCONJ
ihlr-22948	250	32	require	require	VERB
ihlr-22948	250	33	further	further	ADJ
ihlr-22948	250	34	communication	communication	NOUN
ihlr-22948	250	35	and	and	CCONJ
ihlr-22948	250	36	consent	consent	NOUN
ihlr-22948	250	37	before	before	SCONJ
ihlr-22948	250	38	participants	participant	NOUN
ihlr-22948	250	39	are	be	AUX
ihlr-22948	250	40	contacted	contact	VERB
ihlr-22948	250	41	about	about	ADP
ihlr-22948	250	42	sharing	share	VERB
ihlr-22948	250	43	information	information	NOUN
ihlr-22948	250	44	for	for	ADP
ihlr-22948	250	45	research	research	NOUN
ihlr-22948	250	46	or	or	CCONJ
ihlr-22948	250	47	other	other	ADJ
ihlr-22948	250	48	purposes	purpose	NOUN
ihlr-22948	250	49	.	.	PUNCT
ihlr-22948	251	1	for	for	ADP
ihlr-22948	251	2	example	example	NOUN
ihlr-22948	251	3	,	,	PUNCT
ihlr-22948	251	4	a	a	DET
ihlr-22948	251	5	registry	registry	NOUN
ihlr-22948	251	6	may	may	AUX
ihlr-22948	251	7	be	be	AUX
ihlr-22948	251	8	contacted	contact	VERB
ihlr-22948	251	9	by	by	ADP
ihlr-22948	251	10	researchers	researcher	NOUN
ihlr-22948	251	11	interested	interested	ADJ
ihlr-22948	251	12	in	in	ADP
ihlr-22948	251	13	studying	study	VERB
ihlr-22948	251	14	their	their	PRON
ihlr-22948	251	15	participants	participant	NOUN
ihlr-22948	251	16	,	,	PUNCT
ihlr-22948	251	17	and	and	CCONJ
ihlr-22948	251	18	the	the	DET
ihlr-22948	251	19	registry	registry	NOUN
ihlr-22948	251	20	may	may	AUX
ihlr-22948	251	21	then	then	ADV
ihlr-22948	251	22	contact	contact	VERB
ihlr-22948	251	23	their	their	PRON
ihlr-22948	251	24	participants	participant	NOUN
ihlr-22948	251	25	to	to	PART
ihlr-22948	251	26	ask	ask	VERB
ihlr-22948	251	27	whether	whether	SCONJ
ihlr-22948	251	28	they	they	PRON
ihlr-22948	251	29	are	be	AUX
ihlr-22948	251	30	interested	interested	ADJ
ihlr-22948	251	31	in	in	ADP
ihlr-22948	251	32	participating	participate	VERB
ihlr-22948	251	33	in	in	ADP
ihlr-22948	251	34	the	the	DET
ihlr-22948	251	35	proposed	propose	VERB
ihlr-22948	251	36	study	study	NOUN
ihlr-22948	251	37	.	.	PUNCT
ihlr-22948	252	1	registries	registry	NOUN
ihlr-22948	252	2	that	that	PRON
ihlr-22948	252	3	function	function	VERB
ihlr-22948	252	4	in	in	ADP
ihlr-22948	252	5	this	this	DET
ihlr-22948	252	6	way	way	NOUN
ihlr-22948	252	7	raise	raise	VERB
ihlr-22948	252	8	far	far	ADV
ihlr-22948	252	9	more	more	ADV
ihlr-22948	252	10	limited	limited	ADJ
ihlr-22948	252	11	confidentiality	confidentiality	NOUN
ihlr-22948	252	12	and	and	CCONJ
ihlr-22948	252	13	other	other	ADJ
ihlr-22948	252	14	data	datum	NOUN
ihlr-22948	252	15	use	use	VERB
ihlr-22948	252	16	concerns	concern	NOUN
ihlr-22948	252	17	than	than	ADP
ihlr-22948	252	18	registries	registry	NOUN
ihlr-22948	252	19	that	that	PRON
ihlr-22948	252	20	share	share	VERB
ihlr-22948	252	21	contact	contact	NOUN
ihlr-22948	252	22	information	information	NOUN
ihlr-22948	252	23	directly	directly	ADV
ihlr-22948	252	24	with	with	ADP
ihlr-22948	252	25	third	third	ADJ
ihlr-22948	252	26	parties	party	NOUN
ihlr-22948	252	27	or	or	CCONJ
ihlr-22948	252	28	that	that	PRON
ihlr-22948	252	29	collect	collect	VERB
ihlr-22948	252	30	far	far	ADV
ihlr-22948	252	31	greater	great	ADJ
ihlr-22948	252	32	amounts	amount	NOUN
ihlr-22948	252	33	of	of	ADP
ihlr-22948	252	34	information	information	NOUN
ihlr-22948	252	35	about	about	ADP
ihlr-22948	252	36	participants	participant	NOUN
ihlr-22948	252	37	.	.	PUNCT
ihlr-22948	253	1	other	other	ADJ
ihlr-22948	253	2	registries	registry	NOUN
ihlr-22948	253	3	attempt	attempt	VERB
ihlr-22948	253	4	to	to	PART
ihlr-22948	253	5	mitigate	mitigate	VERB
ihlr-22948	253	6	concerns	concern	NOUN
ihlr-22948	253	7	about	about	ADP
ihlr-22948	253	8	confidentiality	confidentiality	NOUN
ihlr-22948	253	9	and	and	CCONJ
ihlr-22948	253	10	scope	scope	NOUN
ihlr-22948	253	11	by	by	ADP
ihlr-22948	253	12	limiting	limit	VERB
ihlr-22948	253	13	their	their	PRON
ihlr-22948	253	14	information	information	NOUN
ihlr-22948	253	15	to	to	ADP
ihlr-22948	253	16	de	de	VERB
ihlr-22948	253	17	-	-	ADJ
ihlr-22948	253	18	identified	identify	VERB
ihlr-22948	253	19	data	datum	NOUN
ihlr-22948	253	20	.	.	PUNCT
ihlr-22948	254	1	there	there	PRON
ihlr-22948	254	2	are	be	VERB
ihlr-22948	254	3	significant	significant	ADJ
ihlr-22948	254	4	controversies	controversy	NOUN
ihlr-22948	254	5	about	about	ADP
ihlr-22948	254	6	the	the	DET
ihlr-22948	254	7	success	success	NOUN
ihlr-22948	254	8	of	of	ADP
ihlr-22948	254	9	de	de	NOUN
ihlr-22948	254	10	-	-	NOUN
ihlr-22948	254	11	identification	identification	NOUN
ihlr-22948	254	12	strategies,50	strategies,50	NOUN
ihlr-22948	254	13	however	however	ADV
ihlr-22948	254	14	.	.	PUNCT
ihlr-22948	255	1	primary	primary	ADJ
ihlr-22948	255	2	problems	problem	NOUN
ihlr-22948	255	3	with	with	ADP
ihlr-22948	255	4	de	de	NOUN
ihlr-22948	255	5	-	-	NOUN
ihlr-22948	255	6	identification	identification	NOUN
ihlr-22948	255	7	occur	occur	VERB
ihlr-22948	255	8	when	when	SCONJ
ihlr-22948	255	9	data	datum	NOUN
ihlr-22948	255	10	sets	set	NOUN
ihlr-22948	255	11	are	be	AUX
ihlr-22948	255	12	combined	combine	VERB
ihlr-22948	255	13	.	.	PUNCT
ihlr-22948	256	1	risks	risk	NOUN
ihlr-22948	256	2	of	of	ADP
ihlr-22948	256	3	re	re	NOUN
ihlr-22948	256	4	-	-	NOUN
ihlr-22948	256	5	identification	identification	NOUN
ihlr-22948	256	6	depend	depend	VERB
ihlr-22948	256	7	on	on	ADP
ihlr-22948	256	8	what	what	PRON
ihlr-22948	256	9	other	other	ADJ
ihlr-22948	256	10	information	information	NOUN
ihlr-22948	256	11	may	may	AUX
ihlr-22948	256	12	be	be	AUX
ihlr-22948	256	13	available	available	ADJ
ihlr-22948	256	14	for	for	ADP
ihlr-22948	256	15	combination	combination	NOUN
ihlr-22948	256	16	with	with	ADP
ihlr-22948	256	17	a	a	DET
ihlr-22948	256	18	particular	particular	ADJ
ihlr-22948	256	19	set	set	NOUN
ihlr-22948	256	20	of	of	ADP
ihlr-22948	256	21	de	de	ADJ
ihlr-22948	256	22	-	-	ADJ
ihlr-22948	256	23	identified	identify	VERB
ihlr-22948	256	24	data	datum	NOUN
ihlr-22948	256	25	.	.	PUNCT
ihlr-22948	257	1	that	that	SCONJ
ihlr-22948	257	2	the	the	DET
ihlr-22948	257	3	availability	availability	NOUN
ihlr-22948	257	4	of	of	ADP
ihlr-22948	257	5	other	other	ADJ
ihlr-22948	257	6	data	datum	NOUN
ihlr-22948	257	7	may	may	AUX
ihlr-22948	257	8	not	not	PART
ihlr-22948	257	9	be	be	AUX
ihlr-22948	257	10	easily	easily	ADV
ihlr-22948	257	11	predicted	predict	VERB
ihlr-22948	257	12	in	in	ADP
ihlr-22948	257	13	advance	advance	NOUN
ihlr-22948	257	14	raises	raise	VERB
ihlr-22948	257	15	particularly	particularly	ADV
ihlr-22948	257	16	difficult	difficult	ADJ
ihlr-22948	257	17	challenges	challenge	NOUN
ihlr-22948	257	18	for	for	ADP
ihlr-22948	257	19	de	de	NOUN
ihlr-22948	257	20	-	-	NOUN
ihlr-22948	257	21	identification	identification	NOUN
ihlr-22948	257	22	strategies	strategy	NOUN
ihlr-22948	257	23	.	.	PUNCT
ihlr-22948	258	1	such	such	ADJ
ihlr-22948	258	2	difficulties	difficulty	NOUN
ihlr-22948	258	3	in	in	ADP
ihlr-22948	258	4	prediction	prediction	NOUN
ihlr-22948	258	5	are	be	AUX
ihlr-22948	258	6	especially	especially	ADV
ihlr-22948	258	7	noteworthy	noteworthy	ADJ
ihlr-22948	258	8	for	for	ADP
ihlr-22948	258	9	registries	registry	NOUN
ihlr-22948	258	10	that	that	PRON
ihlr-22948	258	11	collect	collect	VERB
ihlr-22948	258	12	data	datum	NOUN
ihlr-22948	258	13	longitudinally	longitudinally	ADV
ihlr-22948	258	14	over	over	ADP
ihlr-22948	258	15	comparatively	comparatively	ADV
ihlr-22948	258	16	long	long	ADJ
ihlr-22948	258	17	periods	period	NOUN
ihlr-22948	258	18	of	of	ADP
ihlr-22948	258	19	time	time	NOUN
ihlr-22948	258	20	.	.	PUNCT
ihlr-22948	259	1	even	even	ADV
ihlr-22948	259	2	when	when	SCONJ
ihlr-22948	259	3	data	datum	NOUN
ihlr-22948	259	4	are	be	AUX
ihlr-22948	259	5	deidentified	deidentifie	VERB
ihlr-22948	259	6	,	,	PUNCT
ihlr-22948	259	7	however	however	ADV
ihlr-22948	259	8	,	,	PUNCT
ihlr-22948	259	9	other	other	ADJ
ihlr-22948	259	10	concerns	concern	NOUN
ihlr-22948	259	11	beyond	beyond	ADP
ihlr-22948	259	12	confidentiality	confidentiality	NOUN
ihlr-22948	259	13	may	may	AUX
ihlr-22948	259	14	remain	remain	VERB
ihlr-22948	259	15	.	.	PUNCT
ihlr-22948	260	1	one	one	NUM
ihlr-22948	260	2	particular	particular	ADJ
ihlr-22948	260	3	concern	concern	NOUN
ihlr-22948	260	4	is	be	AUX
ihlr-22948	260	5	that	that	SCONJ
ihlr-22948	260	6	inferences	inference	NOUN
ihlr-22948	260	7	may	may	AUX
ihlr-22948	260	8	be	be	AUX
ihlr-22948	260	9	drawn	draw	VERB
ihlr-22948	260	10	about	about	ADP
ihlr-22948	260	11	group	group	NOUN
ihlr-22948	260	12	members	member	NOUN
ihlr-22948	260	13	based	base	VERB
ihlr-22948	260	14	on	on	ADP
ihlr-22948	260	15	a	a	DET
ihlr-22948	260	16	conjunction	conjunction	NOUN
ihlr-22948	260	17	of	of	ADP
ihlr-22948	260	18	characteristics	characteristic	NOUN
ihlr-22948	260	19	that	that	PRON
ihlr-22948	260	20	may	may	AUX
ihlr-22948	260	21	apply	apply	VERB
ihlr-22948	260	22	even	even	ADV
ihlr-22948	260	23	to	to	ADP
ihlr-22948	260	24	individuals	individual	NOUN
ihlr-22948	260	25	not	not	PART
ihlr-22948	260	26	included	include	VERB
ihlr-22948	260	27	in	in	ADP
ihlr-22948	260	28	the	the	DET
ihlr-22948	260	29	registry.51	registry.51	NOUN
ihlr-22948	260	30	4	4	NUM
ihlr-22948	260	31	.	.	PUNCT
ihlr-22948	260	32	registry	registry	NOUN
ihlr-22948	260	33	funding	funding	NOUN
ihlr-22948	260	34	in	in	ADP
ihlr-22948	260	35	most	most	ADJ
ihlr-22948	260	36	instances	instance	NOUN
ihlr-22948	260	37	,	,	PUNCT
ihlr-22948	260	38	the	the	DET
ihlr-22948	260	39	size	size	NOUN
ihlr-22948	260	40	,	,	PUNCT
ihlr-22948	260	41	scope	scope	NOUN
ihlr-22948	260	42	,	,	PUNCT
ihlr-22948	260	43	and	and	CCONJ
ihlr-22948	260	44	activities	activity	NOUN
ihlr-22948	260	45	of	of	ADP
ihlr-22948	260	46	a	a	DET
ihlr-22948	260	47	registry	registry	NOUN
ihlr-22948	260	48	will	will	AUX
ihlr-22948	260	49	be	be	AUX
ihlr-22948	260	50	determined	determine	VERB
ihlr-22948	260	51	by	by	ADP
ihlr-22948	260	52	the	the	DET
ihlr-22948	260	53	funding	funding	NOUN
ihlr-22948	260	54	that	that	PRON
ihlr-22948	260	55	is	be	AUX
ihlr-22948	260	56	available	available	ADJ
ihlr-22948	260	57	.	.	PUNCT
ihlr-22948	261	1	collecting	collect	VERB
ihlr-22948	261	2	,	,	PUNCT
ihlr-22948	261	3	curating	curating	NOUN
ihlr-22948	261	4	,	,	PUNCT
ihlr-22948	261	5	and	and	CCONJ
ihlr-22948	261	6	protecting	protect	VERB
ihlr-22948	261	7	data	datum	NOUN
ihlr-22948	261	8	are	be	AUX
ihlr-22948	261	9	expensive	expensive	ADJ
ihlr-22948	261	10	activities	activity	NOUN
ihlr-22948	261	11	.	.	PUNCT
ihlr-22948	262	1	even	even	ADV
ihlr-22948	262	2	if	if	SCONJ
ihlr-22948	262	3	they	they	PRON
ihlr-22948	262	4	have	have	AUX
ihlr-22948	262	5	been	be	AUX
ihlr-22948	262	6	originally	originally	ADV
ihlr-22948	262	7	established	establish	VERB
ihlr-22948	262	8	on	on	ADP
ihlr-22948	262	9	a	a	DET
ihlr-22948	262	10	sound	sound	ADJ
ihlr-22948	262	11	financial	financial	ADJ
ihlr-22948	262	12	basis	basis	NOUN
ihlr-22948	262	13	,	,	PUNCT
ihlr-22948	262	14	registries	registry	NOUN
ihlr-22948	262	15	may	may	AUX
ihlr-22948	262	16	be	be	AUX
ihlr-22948	262	17	challenged	challenge	VERB
ihlr-22948	262	18	to	to	PART
ihlr-22948	262	19	remain	remain	VERB
ihlr-22948	262	20	in	in	ADP
ihlr-22948	262	21	operation	operation	NOUN
ihlr-22948	262	22	if	if	SCONJ
ihlr-22948	262	23	they	they	PRON
ihlr-22948	262	24	lack	lack	VERB
ihlr-22948	262	25	reliable	reliable	ADJ
ihlr-22948	262	26	ongoing	ongoing	ADJ
ihlr-22948	262	27	funding	funding	NOUN
ihlr-22948	262	28	sources	source	NOUN
ihlr-22948	262	29	.	.	PUNCT
ihlr-22948	263	1	for	for	ADP
ihlr-22948	263	2	this	this	DET
ihlr-22948	263	3	reason	reason	NOUN
ihlr-22948	263	4	,	,	PUNCT
ihlr-22948	263	5	entities	entity	NOUN
ihlr-22948	263	6	supporting	support	VERB
ihlr-22948	263	7	rare	rare	ADJ
ihlr-22948	263	8	diseases	disease	NOUN
ihlr-22948	263	9	,	,	PUNCT
ihlr-22948	263	10	such	such	ADJ
ihlr-22948	263	11	as	as	ADP
ihlr-22948	263	12	nord	nord	NOUN
ihlr-22948	263	13	,	,	PUNCT
ihlr-22948	263	14	provide	provide	VERB
ihlr-22948	263	15	funding	funding	NOUN
ihlr-22948	263	16	for	for	ADP
ihlr-22948	263	17	registries	registry	NOUN
ihlr-22948	263	18	and	and	CCONJ
ihlr-22948	263	19	their	their	PRON
ihlr-22948	263	20	operation	operation	NOUN
ihlr-22948	263	21	.	.	PUNCT
ihlr-22948	264	1	diverse	diverse	ADJ
ihlr-22948	264	2	groups	group	NOUN
ihlr-22948	264	3	of	of	ADP
ihlr-22948	264	4	stakeholders	stakeholder	NOUN
ihlr-22948	264	5	have	have	AUX
ihlr-22948	264	6	contributed	contribute	VERB
ihlr-22948	264	7	to	to	ADP
ihlr-22948	264	8	a	a	DET
ihlr-22948	264	9	wide	wide	ADJ
ihlr-22948	264	10	variety	variety	NOUN
ihlr-22948	264	11	of	of	ADP
ihlr-22948	264	12	registry	registry	NOUN
ihlr-22948	264	13	funding	funding	NOUN
ihlr-22948	264	14	models	model	NOUN
ihlr-22948	264	15	.	.	PUNCT
ihlr-22948	265	1	some	some	DET
ihlr-22948	265	2	registries	registry	NOUN
ihlr-22948	265	3	are	be	AUX
ihlr-22948	265	4	501(c)(3	501(c)(3	NOUN
ihlr-22948	265	5	)	)	PUNCT
ihlr-22948	265	6	non	non	ADJ
ihlr-22948	265	7	-	-	ADJ
ihlr-22948	265	8	profit	profit	ADJ
ihlr-22948	265	9	organizations	organization	NOUN
ihlr-22948	265	10	,	,	PUNCT
ihlr-22948	265	11	or	or	CCONJ
ihlr-22948	265	12	49	49	NUM
ihlr-22948	265	13	.	.	PUNCT
ihlr-22948	266	1	testimony	testimony	NOUN
ihlr-22948	266	2	of	of	ADP
ihlr-22948	266	3	sarah	sarah	PROPN
ihlr-22948	266	4	tucker	tucker	PROPN
ihlr-22948	266	5	to	to	ADP
ihlr-22948	266	6	the	the	DET
ihlr-22948	266	7	national	national	PROPN
ihlr-22948	266	8	committee	committee	PROPN
ihlr-22948	266	9	on	on	ADP
ihlr-22948	266	10	vital	vital	ADJ
ihlr-22948	266	11	and	and	CCONJ
ihlr-22948	266	12	health	health	NOUN
ihlr-22948	266	13	statistics	statistic	NOUN
ihlr-22948	266	14	,	,	PUNCT
ihlr-22948	266	15	nat’l	nat’l	NOUN
ihlr-22948	266	16	comm	comm	NOUN
ihlr-22948	266	17	.	.	PUNCT
ihlr-22948	267	1	on	on	ADP
ihlr-22948	267	2	vital	vital	ADJ
ihlr-22948	267	3	and	and	CCONJ
ihlr-22948	267	4	health	health	NOUN
ihlr-22948	267	5	stats	stat	NOUN
ihlr-22948	267	6	.	.	PUNCT
ihlr-22948	268	1	(	(	PUNCT
ihlr-22948	268	2	june	june	PROPN
ihlr-22948	268	3	15	15	NUM
ihlr-22948	268	4	,	,	PUNCT
ihlr-22948	268	5	2010	2010	NUM
ihlr-22948	268	6	)	)	PUNCT
ihlr-22948	268	7	,	,	PUNCT
ihlr-22948	268	8	https://ncvhs.hhs.gov/wpcontent/uploads/2014/05/100615p09.pdf	https://ncvhs.hhs.gov/wpcontent/uploads/2014/05/100615p09.pdf	NOUN
ihlr-22948	268	9	[	[	X
ihlr-22948	268	10	https://perma.cc/85ed-bclq	https://perma.cc/85ed-bclq	X
ihlr-22948	268	11	]	]	X
ihlr-22948	268	12	.	.	PUNCT
ihlr-22948	269	1	50	50	NUM
ihlr-22948	269	2	.	.	PUNCT
ihlr-22948	270	1	these	these	DET
ihlr-22948	270	2	concerns	concern	NOUN
ihlr-22948	270	3	apply	apply	VERB
ihlr-22948	270	4	even	even	ADV
ihlr-22948	270	5	to	to	ADP
ihlr-22948	270	6	data	datum	NOUN
ihlr-22948	270	7	de	de	VERB
ihlr-22948	270	8	-	-	VERB
ihlr-22948	270	9	identified	identify	VERB
ihlr-22948	270	10	the	the	DET
ihlr-22948	270	11	extent	extent	NOUN
ihlr-22948	270	12	stipulated	stipulate	VERB
ihlr-22948	270	13	by	by	ADP
ihlr-22948	270	14	the	the	DET
ihlr-22948	270	15	health	health	NOUN
ihlr-22948	270	16	insurance	insurance	NOUN
ihlr-22948	270	17	portability	portability	NOUN
ihlr-22948	270	18	and	and	CCONJ
ihlr-22948	270	19	accountability	accountability	NOUN
ihlr-22948	270	20	act	act	NOUN
ihlr-22948	270	21	(	(	PUNCT
ihlr-22948	270	22	hipaa	hipaa	PROPN
ihlr-22948	270	23	)	)	PUNCT
ihlr-22948	270	24	,	,	PUNCT
ihlr-22948	270	25	45	45	NUM
ihlr-22948	270	26	c.f.r	c.f.r	NOUN
ihlr-22948	270	27	.	.	PUNCT
ihlr-22948	271	1	§	§	PROPN
ihlr-22948	271	2	164.514(a	164.514(a	NUM
ihlr-22948	271	3	)	)	PUNCT
ihlr-22948	271	4	,	,	PUNCT
ihlr-22948	271	5	(	(	PUNCT
ihlr-22948	271	6	b	b	X
ihlr-22948	271	7	)	)	PUNCT
ihlr-22948	271	8	(	(	PUNCT
ihlr-22948	271	9	2018	2018	NUM
ihlr-22948	271	10	)	)	PUNCT
ihlr-22948	271	11	.	.	PUNCT
ihlr-22948	271	12	)	)	PUNCT
ihlr-22948	271	13	see	see	VERB
ihlr-22948	271	14	e.g.	e.g.	ADV
ihlr-22948	271	15	,	,	PUNCT
ihlr-22948	271	16	bradley	bradley	PROPN
ihlr-22948	271	17	malin	malin	PROPN
ihlr-22948	271	18	,	,	PUNCT
ihlr-22948	271	19	a	a	DET
ihlr-22948	271	20	de	de	ADJ
ihlr-22948	271	21	-	-	NOUN
ihlr-22948	271	22	identification	identification	NOUN
ihlr-22948	271	23	strategy	strategy	NOUN
ihlr-22948	271	24	used	use	VERB
ihlr-22948	271	25	for	for	ADP
ihlr-22948	271	26	sharing	share	VERB
ihlr-22948	271	27	one	one	NUM
ihlr-22948	271	28	data	datum	NOUN
ihlr-22948	271	29	provider	provider	NOUN
ihlr-22948	271	30	’s	’s	PART
ihlr-22948	271	31	oncology	oncology	NOUN
ihlr-22948	271	32	trials	trial	NOUN
ihlr-22948	271	33	data	data	VERB
ihlr-22948	271	34	through	through	ADP
ihlr-22948	271	35	the	the	DET
ihlr-22948	271	36	project	project	NOUN
ihlr-22948	271	37	data	datum	NOUN
ihlr-22948	271	38	sphere	sphere	NOUN
ihlr-22948	271	39	®	®	PROPN
ihlr-22948	271	40	repository	repository	NOUN
ihlr-22948	271	41	(	(	PUNCT
ihlr-22948	271	42	2013	2013	NUM
ihlr-22948	271	43	)	)	PUNCT
ihlr-22948	271	44	,	,	PUNCT
ihlr-22948	271	45	https://www.projectdatasphere.org/projectdatasphere/html/resources/pdf/deidentification	https://www.projectdatasphere.org/projectdatasphere/html/resources/pdf/deidentification	NOUN
ihlr-22948	272	1	[	[	X
ihlr-22948	272	2	https://perma.cc/5wj7-2rda	https://perma.cc/5wj7-2rda	X
ihlr-22948	272	3	]	]	PUNCT
ihlr-22948	272	4	.	.	PUNCT
ihlr-22948	273	1	51	51	NUM
ihlr-22948	273	2	.	.	PUNCT
ihlr-22948	274	1	john	john	PROPN
ihlr-22948	274	2	g.	g.	PROPN
ihlr-22948	274	3	francis	francis	PROPN
ihlr-22948	274	4	&	&	CCONJ
ihlr-22948	274	5	leslie	leslie	PROPN
ihlr-22948	274	6	p.	p.	PROPN
ihlr-22948	274	7	francis	francis	PROPN
ihlr-22948	274	8	,	,	PUNCT
ihlr-22948	274	9	privacy	privacy	NOUN
ihlr-22948	274	10	,	,	PUNCT
ihlr-22948	274	11	confidentiality	confidentiality	NOUN
ihlr-22948	274	12	,	,	PUNCT
ihlr-22948	274	13	and	and	CCONJ
ihlr-22948	274	14	justice	justice	NOUN
ihlr-22948	274	15	,	,	PUNCT
ihlr-22948	274	16	45	45	NUM
ihlr-22948	274	17	utah	utah	PROPN
ihlr-22948	274	18	j.	j.	PROPN
ihlr-22948	274	19	of	of	ADP
ihlr-22948	274	20	soc	soc	PROPN
ihlr-22948	274	21	.	.	PUNCT
ihlr-22948	275	1	phil	phil	PROPN
ihlr-22948	275	2	.	.	PUNCT
ihlr-22948	276	1	408	408	NUM
ihlr-22948	276	2	,	,	PUNCT
ihlr-22948	276	3	408	408	NUM
ihlr-22948	276	4	-	-	SYM
ihlr-22948	276	5	431	431	NUM
ihlr-22948	276	6	(	(	PUNCT
ihlr-22948	276	7	2014	2014	NUM
ihlr-22948	276	8	)	)	PUNCT
ihlr-22948	276	9	.	.	PUNCT
ihlr-22948	277	1	54	54	NUM
ihlr-22948	277	2	indiana	indiana	PROPN
ihlr-22948	277	3	health	health	PROPN
ihlr-22948	277	4	law	law	PROPN
ihlr-22948	277	5	review	review	NOUN
ihlr-22948	277	6	[	[	X
ihlr-22948	277	7	vol	vol	NOUN
ihlr-22948	277	8	.	.	PUNCT
ihlr-22948	278	1	16:43	16:43	NUM
ihlr-22948	278	2	maintained	maintain	VERB
ihlr-22948	278	3	by	by	ADP
ihlr-22948	278	4	these	these	DET
ihlr-22948	278	5	organizations	organization	NOUN
ihlr-22948	278	6	,	,	PUNCT
ihlr-22948	278	7	and	and	CCONJ
ihlr-22948	278	8	funded	fund	VERB
ihlr-22948	278	9	largely	largely	ADV
ihlr-22948	278	10	by	by	ADP
ihlr-22948	278	11	donations	donation	NOUN
ihlr-22948	278	12	and	and	CCONJ
ihlr-22948	278	13	fundraising	fundraising	NOUN
ihlr-22948	278	14	efforts	effort	NOUN
ihlr-22948	278	15	.	.	PUNCT
ihlr-22948	279	1	some	some	PRON
ihlr-22948	279	2	receive	receive	VERB
ihlr-22948	279	3	funding	funding	NOUN
ihlr-22948	279	4	from	from	ADP
ihlr-22948	279	5	the	the	DET
ihlr-22948	279	6	institutions	institution	NOUN
ihlr-22948	279	7	hosting	host	VERB
ihlr-22948	279	8	them	they	PRON
ihlr-22948	279	9	such	such	ADJ
ihlr-22948	279	10	as	as	ADP
ihlr-22948	279	11	academic	academic	ADJ
ihlr-22948	279	12	medical	medical	ADJ
ihlr-22948	279	13	centers	center	NOUN
ihlr-22948	279	14	;	;	PUNCT
ihlr-22948	279	15	some	some	PRON
ihlr-22948	279	16	of	of	ADP
ihlr-22948	279	17	this	this	DET
ihlr-22948	279	18	support	support	NOUN
ihlr-22948	279	19	may	may	AUX
ihlr-22948	279	20	take	take	VERB
ihlr-22948	279	21	the	the	DET
ihlr-22948	279	22	form	form	NOUN
ihlr-22948	279	23	of	of	ADP
ihlr-22948	279	24	in	in	ADP
ihlr-22948	279	25	-	-	PUNCT
ihlr-22948	279	26	kind	kind	ADJ
ihlr-22948	279	27	financial	financial	ADJ
ihlr-22948	279	28	assistance	assistance	NOUN
ihlr-22948	279	29	.	.	PUNCT
ihlr-22948	280	1	many	many	ADJ
ihlr-22948	280	2	of	of	ADP
ihlr-22948	280	3	these	these	DET
ihlr-22948	280	4	registries	registry	NOUN
ihlr-22948	280	5	receive	receive	VERB
ihlr-22948	280	6	and	and	CCONJ
ihlr-22948	280	7	are	be	AUX
ihlr-22948	280	8	dependent	dependent	ADJ
ihlr-22948	280	9	on	on	ADP
ihlr-22948	280	10	federal	federal	ADJ
ihlr-22948	280	11	grant	grant	NOUN
ihlr-22948	280	12	support	support	NOUN
ihlr-22948	280	13	,	,	PUNCT
ihlr-22948	280	14	especially	especially	ADV
ihlr-22948	280	15	from	from	ADP
ihlr-22948	280	16	nih	nih	PROPN
ihlr-22948	280	17	;	;	PUNCT
ihlr-22948	280	18	the	the	DET
ihlr-22948	280	19	lifespan	lifespan	NOUN
ihlr-22948	280	20	of	of	ADP
ihlr-22948	280	21	grant	grant	NOUN
ihlr-22948	280	22	-	-	PUNCT
ihlr-22948	280	23	supported	support	VERB
ihlr-22948	280	24	registries	registry	NOUN
ihlr-22948	280	25	may	may	AUX
ihlr-22948	280	26	,	,	PUNCT
ihlr-22948	280	27	however	however	ADV
ihlr-22948	280	28	,	,	PUNCT
ihlr-22948	280	29	be	be	AUX
ihlr-22948	280	30	the	the	DET
ihlr-22948	280	31	lifetime	lifetime	NOUN
ihlr-22948	280	32	of	of	ADP
ihlr-22948	280	33	the	the	DET
ihlr-22948	280	34	grant	grant	NOUN
ihlr-22948	280	35	.	.	PUNCT
ihlr-22948	281	1	registries	registry	NOUN
ihlr-22948	281	2	that	that	PRON
ihlr-22948	281	3	are	be	AUX
ihlr-22948	281	4	supported	support	VERB
ihlr-22948	281	5	by	by	ADP
ihlr-22948	281	6	professional	professional	ADJ
ihlr-22948	281	7	organizations	organization	NOUN
ihlr-22948	281	8	may	may	AUX
ihlr-22948	281	9	function	function	VERB
ihlr-22948	281	10	on	on	ADP
ihlr-22948	281	11	a	a	DET
ihlr-22948	281	12	membership	membership	NOUN
ihlr-22948	281	13	model	model	NOUN
ihlr-22948	281	14	,	,	PUNCT
ihlr-22948	281	15	with	with	ADP
ihlr-22948	281	16	individuals	individual	NOUN
ihlr-22948	281	17	or	or	CCONJ
ihlr-22948	281	18	their	their	PRON
ihlr-22948	281	19	institutions	institution	NOUN
ihlr-22948	281	20	paying	pay	VERB
ihlr-22948	281	21	dues	due	NOUN
ihlr-22948	281	22	or	or	CCONJ
ihlr-22948	281	23	membership	membership	NOUN
ihlr-22948	281	24	fees	fee	NOUN
ihlr-22948	281	25	.	.	PUNCT
ihlr-22948	282	1	on	on	ADP
ihlr-22948	282	2	these	these	DET
ihlr-22948	282	3	models	model	NOUN
ihlr-22948	282	4	,	,	PUNCT
ihlr-22948	282	5	registry	registry	NOUN
ihlr-22948	282	6	data	datum	NOUN
ihlr-22948	282	7	and	and	CCONJ
ihlr-22948	282	8	services	service	NOUN
ihlr-22948	282	9	are	be	AUX
ihlr-22948	282	10	available	available	ADJ
ihlr-22948	282	11	to	to	ADP
ihlr-22948	282	12	feepaying	feepaye	VERB
ihlr-22948	282	13	members	member	NOUN
ihlr-22948	282	14	only	only	ADV
ihlr-22948	282	15	.	.	PUNCT
ihlr-22948	283	1	other	other	ADJ
ihlr-22948	283	2	registries	registry	NOUN
ihlr-22948	283	3	are	be	AUX
ihlr-22948	283	4	funded	fund	VERB
ihlr-22948	283	5	by	by	ADP
ihlr-22948	283	6	commercial	commercial	ADJ
ihlr-22948	283	7	entities	entity	NOUN
ihlr-22948	283	8	such	such	ADJ
ihlr-22948	283	9	as	as	ADP
ihlr-22948	283	10	pharmaceutical	pharmaceutical	ADJ
ihlr-22948	283	11	companies	company	NOUN
ihlr-22948	283	12	.	.	PUNCT
ihlr-22948	284	1	an	an	DET
ihlr-22948	284	2	example	example	NOUN
ihlr-22948	284	3	of	of	ADP
ihlr-22948	284	4	a	a	DET
ihlr-22948	284	5	commercially	commercially	ADV
ihlr-22948	284	6	-	-	PUNCT
ihlr-22948	284	7	funded	fund	VERB
ihlr-22948	284	8	registry	registry	NOUN
ihlr-22948	284	9	is	be	AUX
ihlr-22948	284	10	the	the	DET
ihlr-22948	284	11	registry	registry	NOUN
ihlr-22948	284	12	devoted	devote	VERB
ihlr-22948	284	13	to	to	ADP
ihlr-22948	284	14	gaucher	gaucher	PROPN
ihlr-22948	284	15	disease	disease	PROPN
ihlr-22948	284	16	,	,	PUNCT
ihlr-22948	284	17	an	an	DET
ihlr-22948	284	18	autosomal	autosomal	ADJ
ihlr-22948	284	19	recessive	recessive	ADJ
ihlr-22948	284	20	storage	storage	NOUN
ihlr-22948	284	21	disorder	disorder	NOUN
ihlr-22948	284	22	in	in	ADP
ihlr-22948	284	23	which	which	PRON
ihlr-22948	284	24	patients	patient	NOUN
ihlr-22948	284	25	can	can	AUX
ihlr-22948	284	26	not	not	PART
ihlr-22948	284	27	metabolize	metabolize	VERB
ihlr-22948	284	28	a	a	DET
ihlr-22948	284	29	particular	particular	ADJ
ihlr-22948	284	30	lipid.52	lipid.52	NOUN
ihlr-22948	284	31	the	the	DET
ihlr-22948	284	32	registry	registry	NOUN
ihlr-22948	284	33	has	have	AUX
ihlr-22948	284	34	been	be	AUX
ihlr-22948	284	35	in	in	ADP
ihlr-22948	284	36	operation	operation	NOUN
ihlr-22948	284	37	since	since	SCONJ
ihlr-22948	284	38	1991.53	1991.53	NUM
ihlr-22948	284	39	it	it	PRON
ihlr-22948	284	40	is	be	AUX
ihlr-22948	284	41	supported	support	VERB
ihlr-22948	284	42	by	by	ADP
ihlr-22948	284	43	genzyme.54	genzyme.54	NOUN
ihlr-22948	284	44	it	it	PRON
ihlr-22948	284	45	currently	currently	ADV
ihlr-22948	284	46	houses	house	VERB
ihlr-22948	284	47	records	record	NOUN
ihlr-22948	284	48	of	of	ADP
ihlr-22948	284	49	over	over	ADP
ihlr-22948	284	50	6000	6000	NUM
ihlr-22948	284	51	patients	patient	NOUN
ihlr-22948	284	52	from	from	ADP
ihlr-22948	284	53	sixty	sixty	NUM
ihlr-22948	284	54	-	-	PUNCT
ihlr-22948	284	55	two	two	NUM
ihlr-22948	284	56	countries.55	countries.55	NOUN
ihlr-22948	284	57	one	one	NUM
ihlr-22948	284	58	common	common	ADJ
ihlr-22948	284	59	theme	theme	NOUN
ihlr-22948	284	60	in	in	ADP
ihlr-22948	284	61	the	the	DET
ihlr-22948	284	62	registry	registry	NOUN
ihlr-22948	284	63	landscape	landscape	NOUN
ihlr-22948	284	64	with	with	ADP
ihlr-22948	284	65	regard	regard	NOUN
ihlr-22948	284	66	to	to	ADP
ihlr-22948	284	67	registry	registry	NOUN
ihlr-22948	284	68	funding	funding	NOUN
ihlr-22948	284	69	is	be	AUX
ihlr-22948	284	70	that	that	SCONJ
ihlr-22948	284	71	registry	registry	NOUN
ihlr-22948	284	72	stakeholders	stakeholder	NOUN
ihlr-22948	284	73	play	play	VERB
ihlr-22948	284	74	a	a	DET
ihlr-22948	284	75	major	major	ADJ
ihlr-22948	284	76	role	role	NOUN
ihlr-22948	284	77	in	in	ADP
ihlr-22948	284	78	the	the	DET
ihlr-22948	284	79	source	source	NOUN
ihlr-22948	284	80	of	of	ADP
ihlr-22948	284	81	a	a	DET
ihlr-22948	284	82	registry	registry	NOUN
ihlr-22948	284	83	’s	’s	PART
ihlr-22948	284	84	funding.56	funding.56	NOUN
ihlr-22948	284	85	iii	iii	NOUN
ihlr-22948	284	86	.	.	PUNCT
ihlr-22948	285	1	legal	legal	ADJ
ihlr-22948	285	2	protections	protection	NOUN
ihlr-22948	285	3	for	for	ADP
ihlr-22948	285	4	information	information	NOUN
ihlr-22948	285	5	in	in	ADP
ihlr-22948	285	6	registries	registry	NOUN
ihlr-22948	285	7	like	like	ADP
ihlr-22948	285	8	registries	registry	NOUN
ihlr-22948	285	9	themselves	themselves	PRON
ihlr-22948	285	10	,	,	PUNCT
ihlr-22948	285	11	the	the	DET
ihlr-22948	285	12	legal	legal	ADJ
ihlr-22948	285	13	protections	protection	NOUN
ihlr-22948	285	14	that	that	PRON
ihlr-22948	285	15	apply	apply	VERB
ihlr-22948	285	16	to	to	ADP
ihlr-22948	285	17	them	they	PRON
ihlr-22948	285	18	vary	vary	VERB
ihlr-22948	285	19	in	in	ADP
ihlr-22948	285	20	many	many	ADJ
ihlr-22948	285	21	ways	way	NOUN
ihlr-22948	285	22	.	.	PUNCT
ihlr-22948	286	1	this	this	DET
ihlr-22948	286	2	section	section	NOUN
ihlr-22948	286	3	describes	describe	VERB
ihlr-22948	286	4	the	the	DET
ihlr-22948	286	5	two	two	NUM
ihlr-22948	286	6	u.s	u.s	PROPN
ihlr-22948	286	7	.	.	PROPN
ihlr-22948	286	8	federal	federal	ADJ
ihlr-22948	286	9	regulatory	regulatory	ADJ
ihlr-22948	286	10	structures	structure	NOUN
ihlr-22948	286	11	that	that	PRON
ihlr-22948	286	12	apply	apply	VERB
ihlr-22948	286	13	to	to	PART
ihlr-22948	286	14	protect	protect	VERB
ihlr-22948	286	15	information	information	NOUN
ihlr-22948	286	16	in	in	ADP
ihlr-22948	286	17	some	some	DET
ihlr-22948	286	18	registries	registry	NOUN
ihlr-22948	286	19	:	:	PUNCT
ihlr-22948	286	20	the	the	DET
ihlr-22948	286	21	common	common	ADJ
ihlr-22948	286	22	rule	rule	NOUN
ihlr-22948	286	23	,	,	PUNCT
ihlr-22948	286	24	governing	govern	VERB
ihlr-22948	286	25	research	research	NOUN
ihlr-22948	286	26	with	with	ADP
ihlr-22948	286	27	human	human	ADJ
ihlr-22948	286	28	subjects	subject	NOUN
ihlr-22948	286	29	,	,	PUNCT
ihlr-22948	286	30	and	and	CCONJ
ihlr-22948	286	31	the	the	DET
ihlr-22948	286	32	health	health	NOUN
ihlr-22948	286	33	insurance	insurance	NOUN
ihlr-22948	286	34	portability	portability	NOUN
ihlr-22948	286	35	and	and	CCONJ
ihlr-22948	286	36	accountability	accountability	NOUN
ihlr-22948	286	37	act	act	NOUN
ihlr-22948	286	38	(	(	PUNCT
ihlr-22948	286	39	hipaa	hipaa	PROPN
ihlr-22948	286	40	)	)	PUNCT
ihlr-22948	286	41	,	,	PUNCT
ihlr-22948	286	42	governing	govern	VERB
ihlr-22948	286	43	privacy	privacy	NOUN
ihlr-22948	286	44	and	and	CCONJ
ihlr-22948	286	45	security	security	NOUN
ihlr-22948	286	46	rules	rule	NOUN
ihlr-22948	286	47	.	.	PUNCT
ihlr-22948	287	1	other	other	ADJ
ihlr-22948	287	2	regulatory	regulatory	ADJ
ihlr-22948	287	3	structures	structure	NOUN
ihlr-22948	287	4	may	may	AUX
ihlr-22948	287	5	also	also	ADV
ihlr-22948	287	6	apply	apply	VERB
ihlr-22948	287	7	to	to	ADP
ihlr-22948	287	8	registries	registry	NOUN
ihlr-22948	287	9	but	but	CCONJ
ihlr-22948	287	10	are	be	AUX
ihlr-22948	287	11	beyond	beyond	ADP
ihlr-22948	287	12	the	the	DET
ihlr-22948	287	13	scope	scope	NOUN
ihlr-22948	287	14	of	of	ADP
ihlr-22948	287	15	this	this	DET
ihlr-22948	287	16	description	description	NOUN
ihlr-22948	287	17	.	.	PUNCT
ihlr-22948	288	1	at	at	ADP
ihlr-22948	288	2	the	the	DET
ihlr-22948	288	3	u.s	u.s	PROPN
ihlr-22948	288	4	.	.	PROPN
ihlr-22948	288	5	federal	federal	ADJ
ihlr-22948	288	6	level	level	NOUN
ihlr-22948	288	7	in	in	ADP
ihlr-22948	288	8	the	the	DET
ihlr-22948	288	9	background	background	NOUN
ihlr-22948	288	10	is	be	AUX
ihlr-22948	288	11	the	the	DET
ihlr-22948	288	12	federal	federal	ADJ
ihlr-22948	288	13	trade	trade	PROPN
ihlr-22948	288	14	act	act	PROPN
ihlr-22948	288	15	prohibition	prohibition	NOUN
ihlr-22948	288	16	on	on	ADP
ihlr-22948	288	17	unfair	unfair	ADJ
ihlr-22948	288	18	or	or	CCONJ
ihlr-22948	288	19	deceptive	deceptive	ADJ
ihlr-22948	288	20	trade	trade	NOUN
ihlr-22948	288	21	practices	practice	NOUN
ihlr-22948	288	22	that	that	PRON
ihlr-22948	288	23	requires	require	VERB
ihlr-22948	288	24	registries	registry	NOUN
ihlr-22948	288	25	to	to	PART
ihlr-22948	288	26	abide	abide	VERB
ihlr-22948	288	27	by	by	ADP
ihlr-22948	288	28	any	any	DET
ihlr-22948	288	29	data	datum	NOUN
ihlr-22948	288	30	protection	protection	NOUN
ihlr-22948	288	31	assurances	assurance	NOUN
ihlr-22948	288	32	they	they	PRON
ihlr-22948	288	33	make	make	VERB
ihlr-22948	288	34	explicitly	explicitly	ADV
ihlr-22948	288	35	and	and	CCONJ
ihlr-22948	288	36	not	not	PART
ihlr-22948	288	37	to	to	PART
ihlr-22948	288	38	collect	collect	VERB
ihlr-22948	288	39	information	information	NOUN
ihlr-22948	288	40	in	in	ADP
ihlr-22948	288	41	ways	way	NOUN
ihlr-22948	288	42	people	people	NOUN
ihlr-22948	288	43	might	might	AUX
ihlr-22948	288	44	not	not	PART
ihlr-22948	288	45	expect	expect	VERB
ihlr-22948	288	46	and	and	CCONJ
ihlr-22948	288	47	that	that	PRON
ihlr-22948	288	48	could	could	AUX
ihlr-22948	288	49	be	be	AUX
ihlr-22948	288	50	harmful	harmful	ADJ
ihlr-22948	288	51	to	to	ADP
ihlr-22948	288	52	them	they	PRON
ihlr-22948	288	53	in	in	ADP
ihlr-22948	288	54	ways	way	NOUN
ihlr-22948	288	55	they	they	PRON
ihlr-22948	288	56	are	be	AUX
ihlr-22948	288	57	ill	ill	ADV
ihlr-22948	288	58	-	-	PUNCT
ihlr-22948	288	59	equipped	equip	VERB
ihlr-22948	288	60	to	to	PART
ihlr-22948	288	61	prevent.57	prevent.57	VERB
ihlr-22948	288	62	in	in	ADP
ihlr-22948	288	63	the	the	DET
ihlr-22948	288	64	u.s	u.s	PROPN
ihlr-22948	288	65	.	.	PROPN
ihlr-22948	288	66	,	,	PUNCT
ihlr-22948	288	67	several	several	ADJ
ihlr-22948	288	68	states	state	NOUN
ihlr-22948	288	69	are	be	AUX
ihlr-22948	288	70	engaging	engage	VERB
ihlr-22948	288	71	in	in	ADP
ihlr-22948	288	72	their	their	PRON
ihlr-22948	288	73	own	own	ADJ
ihlr-22948	288	74	efforts	effort	NOUN
ihlr-22948	288	75	to	to	PART
ihlr-22948	288	76	protect	protect	VERB
ihlr-22948	288	77	data	datum	NOUN
ihlr-22948	288	78	privacy	privacy	NOUN
ihlr-22948	288	79	.	.	PUNCT
ihlr-22948	289	1	there	there	PRON
ihlr-22948	289	2	are	be	VERB
ihlr-22948	289	3	also	also	ADV
ihlr-22948	289	4	many	many	ADJ
ihlr-22948	289	5	trans	trans	ADJ
ihlr-22948	289	6	-	-	ADJ
ihlr-22948	289	7	national	national	ADJ
ihlr-22948	289	8	regulations	regulation	NOUN
ihlr-22948	289	9	,	,	PUNCT
ihlr-22948	289	10	the	the	DET
ihlr-22948	289	11	most	most	ADV
ihlr-22948	289	12	notable	notable	ADJ
ihlr-22948	289	13	of	of	ADP
ihlr-22948	289	14	which	which	PRON
ihlr-22948	289	15	is	be	AUX
ihlr-22948	289	16	the	the	DET
ihlr-22948	289	17	european	european	PROPN
ihlr-22948	289	18	union	union	PROPN
ihlr-22948	289	19	data	data	PROPN
ihlr-22948	289	20	protection	protection	PROPN
ihlr-22948	289	21	regulation	regulation	NOUN
ihlr-22948	289	22	,	,	PUNCT
ihlr-22948	289	23	and	and	CCONJ
ihlr-22948	289	24	other	other	ADJ
ihlr-22948	289	25	data	data	NOUN
ihlr-22948	289	26	protection	protection	NOUN
ihlr-22948	289	27	regulations	regulation	NOUN
ihlr-22948	289	28	in	in	ADP
ihlr-22948	289	29	jurisdictions	jurisdiction	NOUN
ihlr-22948	289	30	outside	outside	ADP
ihlr-22948	289	31	of	of	ADP
ihlr-22948	289	32	the	the	DET
ihlr-22948	289	33	u.s.58	u.s.58	NOUN
ihlr-22948	289	34	52	52	NUM
ihlr-22948	289	35	.	.	PUNCT
ihlr-22948	290	1	neil	neil	PROPN
ihlr-22948	290	2	j.	j.	PROPN
ihlr-22948	290	3	weinreb	weinreb	PROPN
ihlr-22948	290	4	&	&	CCONJ
ihlr-22948	290	5	paige	paige	PROPN
ihlr-22948	290	6	kaplan	kaplan	PROPN
ihlr-22948	290	7	,	,	PUNCT
ihlr-22948	290	8	the	the	DET
ihlr-22948	290	9	history	history	NOUN
ihlr-22948	290	10	and	and	CCONJ
ihlr-22948	290	11	accomplishments	accomplishment	NOUN
ihlr-22948	290	12	of	of	ADP
ihlr-22948	290	13	the	the	DET
ihlr-22948	290	14	icgg	icgg	PROPN
ihlr-22948	290	15	gaucher	gaucher	PROPN
ihlr-22948	290	16	registry	registry	PROPN
ihlr-22948	290	17	,	,	PUNCT
ihlr-22948	290	18	90	90	NUM
ihlr-22948	290	19	am	am	NOUN
ihlr-22948	290	20	.	.	PUNCT
ihlr-22948	291	1	j.	j.	PROPN
ihlr-22948	291	2	hematology	hematology	PROPN
ihlr-22948	291	3	s2	s2	PROPN
ihlr-22948	291	4	,	,	PUNCT
ihlr-22948	291	5	s2	s2	PROPN
ihlr-22948	291	6	-	-	PUNCT
ihlr-22948	291	7	s5	s5	NOUN
ihlr-22948	291	8	(	(	PUNCT
ihlr-22948	291	9	2015	2015	NUM
ihlr-22948	291	10	)	)	PUNCT
ihlr-22948	291	11	.	.	PUNCT
ihlr-22948	292	1	53	53	NUM
ihlr-22948	292	2	.	.	PUNCT
ihlr-22948	293	1	i	i	PRON
ihlr-22948	293	2	d.	d.	PROPN
ihlr-22948	293	3	54	54	NUM
ihlr-22948	293	4	.	.	PUNCT
ihlr-22948	294	1	i	i	PRON
ihlr-22948	294	2	d.	d.	PROPN
ihlr-22948	294	3	55	55	NUM
ihlr-22948	294	4	.	.	PUNCT
ihlr-22948	295	1	i	i	PRON
ihlr-22948	295	2	d.	d.	PROPN
ihlr-22948	295	3	56	56	NUM
ihlr-22948	295	4	.	.	PUNCT
ihlr-22948	296	1	i	i	PRON
ihlr-22948	296	2	d.	d.	PROPN
ihlr-22948	296	3	57	57	NUM
ihlr-22948	296	4	.	.	PUNCT
ihlr-22948	297	1	federal	federal	PROPN
ihlr-22948	297	2	trade	trade	PROPN
ihlr-22948	297	3	commission	commission	PROPN
ihlr-22948	297	4	act	act	NOUN
ihlr-22948	297	5	§	§	PROPN
ihlr-22948	297	6	5	5	NUM
ihlr-22948	297	7	,	,	PUNCT
ihlr-22948	297	8	15	15	NUM
ihlr-22948	297	9	u.s.c	u.s.c	ADJ
ihlr-22948	297	10	.	.	PUNCT
ihlr-22948	298	1	§	§	PROPN
ihlr-22948	298	2	45(a)(1	45(a)(1	NUM
ihlr-22948	298	3	)	)	PUNCT
ihlr-22948	298	4	(	(	PUNCT
ihlr-22948	298	5	2018	2018	NUM
ihlr-22948	298	6	)	)	PUNCT
ihlr-22948	298	7	.	.	PUNCT
ihlr-22948	299	1	58	58	NUM
ihlr-22948	299	2	.	.	X
ihlr-22948	300	1	2016	2016	NUM
ihlr-22948	300	2	o.j	o.j	PROPN
ihlr-22948	300	3	.	.	PUNCT
ihlr-22948	300	4	(	(	PUNCT
ihlr-22948	300	5	l	l	PROPN
ihlr-22948	300	6	119	119	NUM
ihlr-22948	300	7	)	)	PUNCT
ihlr-22948	300	8	1	1	NUM
ihlr-22948	300	9	.	.	NOUN
ihlr-22948	300	10	2018	2018	NUM
ihlr-22948	300	11	]	]	PUNCT
ihlr-22948	300	12	patient	patient	ADJ
ihlr-22948	300	13	registries	registry	NOUN
ihlr-22948	300	14	and	and	CCONJ
ihlr-22948	300	15	their	their	PRON
ihlr-22948	300	16	governance	governance	NOUN
ihlr-22948	300	17	55	55	NUM
ihlr-22948	300	18	a.	a.	NOUN
ihlr-22948	300	19	the	the	DET
ihlr-22948	300	20	common	common	ADJ
ihlr-22948	300	21	rule	rule	NOUN
ihlr-22948	300	22	and	and	CCONJ
ihlr-22948	300	23	patient	patient	ADJ
ihlr-22948	300	24	registries	registry	NOUN
ihlr-22948	300	25	many	many	ADJ
ihlr-22948	300	26	patient	patient	ADJ
ihlr-22948	300	27	registries	registry	NOUN
ihlr-22948	300	28	are	be	AUX
ihlr-22948	300	29	constructed	construct	VERB
ihlr-22948	300	30	in	in	ADP
ihlr-22948	300	31	settings	setting	NOUN
ihlr-22948	300	32	that	that	PRON
ihlr-22948	300	33	require	require	VERB
ihlr-22948	300	34	conformity	conformity	NOUN
ihlr-22948	300	35	with	with	ADP
ihlr-22948	300	36	the	the	DET
ihlr-22948	300	37	federal	federal	ADJ
ihlr-22948	300	38	regulations	regulation	NOUN
ihlr-22948	300	39	governing	govern	VERB
ihlr-22948	300	40	research	research	NOUN
ihlr-22948	300	41	subjects	subject	NOUN
ihlr-22948	300	42	.	.	PUNCT
ihlr-22948	301	1	strictly	strictly	ADV
ihlr-22948	301	2	construed	construe	VERB
ihlr-22948	301	3	,	,	PUNCT
ihlr-22948	301	4	these	these	DET
ihlr-22948	301	5	regulations	regulation	NOUN
ihlr-22948	301	6	apply	apply	VERB
ihlr-22948	301	7	to	to	ADP
ihlr-22948	301	8	research	research	NOUN
ihlr-22948	301	9	receiving	receive	VERB
ihlr-22948	301	10	federal	federal	ADJ
ihlr-22948	301	11	funding	funding	NOUN
ihlr-22948	301	12	or	or	CCONJ
ihlr-22948	301	13	to	to	PART
ihlr-22948	301	14	research	research	VERB
ihlr-22948	301	15	that	that	PRON
ihlr-22948	301	16	will	will	AUX
ihlr-22948	301	17	be	be	AUX
ihlr-22948	301	18	submitted	submit	VERB
ihlr-22948	301	19	to	to	ADP
ihlr-22948	301	20	the	the	DET
ihlr-22948	301	21	fda	fda	PROPN
ihlr-22948	301	22	for	for	ADP
ihlr-22948	301	23	approval	approval	NOUN
ihlr-22948	301	24	of	of	ADP
ihlr-22948	301	25	drugs	drug	NOUN
ihlr-22948	301	26	or	or	CCONJ
ihlr-22948	301	27	devices	device	NOUN
ihlr-22948	301	28	.	.	PUNCT
ihlr-22948	302	1	however	however	ADV
ihlr-22948	302	2	,	,	PUNCT
ihlr-22948	302	3	many	many	ADJ
ihlr-22948	302	4	institutions	institution	NOUN
ihlr-22948	302	5	apply	apply	VERB
ihlr-22948	302	6	the	the	DET
ihlr-22948	302	7	federal	federal	ADJ
ihlr-22948	302	8	regulations	regulation	NOUN
ihlr-22948	302	9	governing	govern	VERB
ihlr-22948	302	10	research	research	NOUN
ihlr-22948	302	11	to	to	ADP
ihlr-22948	302	12	all	all	DET
ihlr-22948	302	13	research	research	NOUN
ihlr-22948	302	14	they	they	PRON
ihlr-22948	302	15	conduct	conduct	VERB
ihlr-22948	302	16	;	;	PUNCT
ihlr-22948	302	17	thus	thus	ADV
ihlr-22948	302	18	,	,	PUNCT
ihlr-22948	302	19	registries	registry	NOUN
ihlr-22948	302	20	maintained	maintain	VERB
ihlr-22948	302	21	by	by	ADP
ihlr-22948	302	22	academic	academic	ADJ
ihlr-22948	302	23	medical	medical	ADJ
ihlr-22948	302	24	institutions	institution	NOUN
ihlr-22948	302	25	will	will	AUX
ihlr-22948	302	26	typically	typically	ADV
ihlr-22948	302	27	be	be	AUX
ihlr-22948	302	28	governed	govern	VERB
ihlr-22948	302	29	by	by	ADP
ihlr-22948	302	30	the	the	DET
ihlr-22948	302	31	federal	federal	ADJ
ihlr-22948	302	32	regulations	regulation	NOUN
ihlr-22948	302	33	.	.	PUNCT
ihlr-22948	303	1	the	the	DET
ihlr-22948	303	2	fda	fda	PROPN
ihlr-22948	303	3	regulations	regulation	NOUN
ihlr-22948	303	4	and	and	CCONJ
ihlr-22948	303	5	the	the	DET
ihlr-22948	303	6	common	common	ADJ
ihlr-22948	303	7	rule	rule	NOUN
ihlr-22948	303	8	differ	differ	VERB
ihlr-22948	303	9	somewhat	somewhat	ADV
ihlr-22948	303	10	but	but	CCONJ
ihlr-22948	303	11	in	in	ADP
ihlr-22948	303	12	ways	way	NOUN
ihlr-22948	303	13	that	that	PRON
ihlr-22948	303	14	are	be	AUX
ihlr-22948	303	15	not	not	PART
ihlr-22948	303	16	relevant	relevant	ADJ
ihlr-22948	303	17	to	to	ADP
ihlr-22948	303	18	this	this	DET
ihlr-22948	303	19	discussion	discussion	NOUN
ihlr-22948	303	20	;	;	PUNCT
ihlr-22948	303	21	what	what	PRON
ihlr-22948	303	22	follows	follow	VERB
ihlr-22948	303	23	is	be	AUX
ihlr-22948	303	24	a	a	DET
ihlr-22948	303	25	summary	summary	NOUN
ihlr-22948	303	26	of	of	ADP
ihlr-22948	303	27	common	common	ADJ
ihlr-22948	303	28	rule	rule	NOUN
ihlr-22948	303	29	requirements	requirement	NOUN
ihlr-22948	303	30	as	as	SCONJ
ihlr-22948	303	31	they	they	PRON
ihlr-22948	303	32	apply	apply	VERB
ihlr-22948	303	33	to	to	ADP
ihlr-22948	303	34	registries	registry	NOUN
ihlr-22948	303	35	.	.	PUNCT
ihlr-22948	304	1	the	the	DET
ihlr-22948	304	2	common	common	ADJ
ihlr-22948	304	3	rule	rule	NOUN
ihlr-22948	304	4	defines	define	NOUN
ihlr-22948	304	5	“	"	PUNCT
ihlr-22948	304	6	research	research	NOUN
ihlr-22948	304	7	”	"	PUNCT
ihlr-22948	304	8	as	as	ADP
ihlr-22948	304	9	“	"	PUNCT
ihlr-22948	304	10	a	a	DET
ihlr-22948	304	11	systematic	systematic	ADJ
ihlr-22948	304	12	investigation	investigation	NOUN
ihlr-22948	304	13	.	.	PUNCT
ihlr-22948	304	14	.	.	PUNCT
ihlr-22948	304	15	.	.	PUNCT
ihlr-22948	305	1	designed	design	VERB
ihlr-22948	305	2	to	to	PART
ihlr-22948	305	3	develop	develop	VERB
ihlr-22948	305	4	or	or	CCONJ
ihlr-22948	305	5	contribute	contribute	VERB
ihlr-22948	305	6	to	to	ADP
ihlr-22948	305	7	generalizable	generalizable	ADJ
ihlr-22948	305	8	knowledge	knowledge	NOUN
ihlr-22948	305	9	.	.	PUNCT
ihlr-22948	306	1	”59	”59	ADJ
ihlr-22948	306	2	public	public	ADJ
ihlr-22948	306	3	health	health	NOUN
ihlr-22948	306	4	surveillance	surveillance	NOUN
ihlr-22948	306	5	activities	activity	NOUN
ihlr-22948	306	6	are	be	AUX
ihlr-22948	306	7	excluded	exclude	VERB
ihlr-22948	306	8	from	from	ADP
ihlr-22948	306	9	this	this	DET
ihlr-22948	306	10	definition.60	definition.60	NOUN
ihlr-22948	306	11	collection	collection	NOUN
ihlr-22948	306	12	of	of	ADP
ihlr-22948	306	13	information	information	NOUN
ihlr-22948	306	14	is	be	AUX
ihlr-22948	306	15	not	not	PART
ihlr-22948	306	16	“	"	PUNCT
ihlr-22948	306	17	human	human	ADJ
ihlr-22948	306	18	subjects	subject	NOUN
ihlr-22948	306	19	research	research	VERB
ihlr-22948	306	20	”	"	PUNCT
ihlr-22948	306	21	if	if	SCONJ
ihlr-22948	306	22	the	the	DET
ihlr-22948	306	23	information	information	NOUN
ihlr-22948	306	24	is	be	AUX
ihlr-22948	306	25	not	not	PART
ihlr-22948	306	26	collected	collect	VERB
ihlr-22948	306	27	through	through	ADP
ihlr-22948	306	28	intervention	intervention	NOUN
ihlr-22948	306	29	or	or	CCONJ
ihlr-22948	306	30	interaction	interaction	NOUN
ihlr-22948	306	31	with	with	ADP
ihlr-22948	306	32	the	the	DET
ihlr-22948	306	33	individual	individual	NOUN
ihlr-22948	306	34	or	or	CCONJ
ihlr-22948	306	35	does	do	AUX
ihlr-22948	306	36	not	not	PART
ihlr-22948	306	37	involve	involve	VERB
ihlr-22948	306	38	identifiable	identifiable	ADJ
ihlr-22948	306	39	private	private	ADJ
ihlr-22948	306	40	information	information	NOUN
ihlr-22948	306	41	or	or	CCONJ
ihlr-22948	306	42	biospecimen.61	biospecimen.61	NOUN
ihlr-22948	306	43	registries	registry	NOUN
ihlr-22948	306	44	containing	contain	VERB
ihlr-22948	306	45	neither	neither	CCONJ
ihlr-22948	306	46	individually	individually	ADV
ihlr-22948	306	47	identifiable	identifiable	ADJ
ihlr-22948	306	48	information	information	NOUN
ihlr-22948	306	49	nor	nor	CCONJ
ihlr-22948	306	50	assembled	assemble	VERB
ihlr-22948	306	51	by	by	ADP
ihlr-22948	306	52	contact	contact	NOUN
ihlr-22948	306	53	with	with	ADP
ihlr-22948	306	54	the	the	DET
ihlr-22948	306	55	people	people	NOUN
ihlr-22948	306	56	about	about	ADP
ihlr-22948	306	57	whom	whom	PRON
ihlr-22948	306	58	they	they	PRON
ihlr-22948	306	59	contain	contain	VERB
ihlr-22948	306	60	information	information	NOUN
ihlr-22948	306	61	are	be	AUX
ihlr-22948	306	62	thus	thus	ADV
ihlr-22948	306	63	not	not	PART
ihlr-22948	306	64	covered	cover	VERB
ihlr-22948	306	65	by	by	ADP
ihlr-22948	306	66	the	the	DET
ihlr-22948	306	67	common	common	ADJ
ihlr-22948	306	68	rule.62	rule.62	NOUN
ihlr-22948	306	69	if	if	SCONJ
ihlr-22948	306	70	information	information	NOUN
ihlr-22948	306	71	is	be	AUX
ihlr-22948	306	72	collected	collect	VERB
ihlr-22948	306	73	from	from	ADP
ihlr-22948	306	74	the	the	DET
ihlr-22948	306	75	medical	medical	ADJ
ihlr-22948	306	76	records	record	NOUN
ihlr-22948	306	77	of	of	ADP
ihlr-22948	306	78	identifiable	identifiable	ADJ
ihlr-22948	306	79	individuals	individual	NOUN
ihlr-22948	306	80	but	but	CCONJ
ihlr-22948	306	81	recorded	record	VERB
ihlr-22948	306	82	in	in	ADP
ihlr-22948	306	83	the	the	DET
ihlr-22948	306	84	registry	registry	NOUN
ihlr-22948	306	85	in	in	ADP
ihlr-22948	306	86	a	a	DET
ihlr-22948	306	87	manner	manner	NOUN
ihlr-22948	306	88	that	that	PRON
ihlr-22948	306	89	does	do	AUX
ihlr-22948	306	90	not	not	PART
ihlr-22948	306	91	allow	allow	VERB
ihlr-22948	306	92	the	the	DET
ihlr-22948	306	93	identity	identity	NOUN
ihlr-22948	306	94	of	of	ADP
ihlr-22948	306	95	the	the	DET
ihlr-22948	306	96	individuals	individual	NOUN
ihlr-22948	306	97	to	to	PART
ihlr-22948	306	98	be	be	AUX
ihlr-22948	306	99	readily	readily	ADV
ihlr-22948	306	100	ascertained	ascertain	VERB
ihlr-22948	306	101	,	,	PUNCT
ihlr-22948	306	102	the	the	DET
ihlr-22948	306	103	individuals	individual	NOUN
ihlr-22948	306	104	are	be	AUX
ihlr-22948	306	105	not	not	PART
ihlr-22948	306	106	contacted	contact	VERB
ihlr-22948	306	107	for	for	ADP
ihlr-22948	306	108	the	the	DET
ihlr-22948	306	109	research	research	NOUN
ihlr-22948	306	110	,	,	PUNCT
ihlr-22948	306	111	and	and	CCONJ
ihlr-22948	306	112	the	the	DET
ihlr-22948	306	113	researcher	researcher	NOUN
ihlr-22948	306	114	does	do	AUX
ihlr-22948	306	115	not	not	PART
ihlr-22948	306	116	make	make	VERB
ihlr-22948	306	117	efforts	effort	NOUN
ihlr-22948	306	118	to	to	PART
ihlr-22948	306	119	reidentify	reidentify	VERB
ihlr-22948	306	120	the	the	DET
ihlr-22948	306	121	individuals	individual	NOUN
ihlr-22948	306	122	,	,	PUNCT
ihlr-22948	306	123	research	research	NOUN
ihlr-22948	306	124	using	use	VERB
ihlr-22948	306	125	that	that	DET
ihlr-22948	306	126	information	information	NOUN
ihlr-22948	306	127	is	be	AUX
ihlr-22948	306	128	exempt	exempt	ADJ
ihlr-22948	306	129	from	from	ADP
ihlr-22948	306	130	further	further	ADJ
ihlr-22948	306	131	common	common	ADJ
ihlr-22948	306	132	rule	rule	NOUN
ihlr-22948	306	133	requirements.63	requirements.63	ADJ
ihlr-22948	306	134	use	use	NOUN
ihlr-22948	306	135	of	of	ADP
ihlr-22948	306	136	identifiable	identifiable	ADJ
ihlr-22948	306	137	information	information	NOUN
ihlr-22948	306	138	in	in	ADP
ihlr-22948	306	139	registries	registry	NOUN
ihlr-22948	306	140	is	be	AUX
ihlr-22948	306	141	also	also	ADV
ihlr-22948	306	142	exempt	exempt	ADJ
ihlr-22948	306	143	from	from	ADP
ihlr-22948	306	144	the	the	DET
ihlr-22948	306	145	common	common	ADJ
ihlr-22948	306	146	rule	rule	NOUN
ihlr-22948	306	147	if	if	SCONJ
ihlr-22948	306	148	it	it	PRON
ihlr-22948	306	149	is	be	AUX
ihlr-22948	306	150	for	for	ADP
ihlr-22948	306	151	health	health	NOUN
ihlr-22948	306	152	care	care	NOUN
ihlr-22948	306	153	operations	operation	NOUN
ihlr-22948	306	154	or	or	CCONJ
ihlr-22948	306	155	for	for	ADP
ihlr-22948	306	156	public	public	ADJ
ihlr-22948	306	157	health	health	NOUN
ihlr-22948	306	158	activities	activity	NOUN
ihlr-22948	306	159	;	;	PUNCT
ihlr-22948	306	160	in	in	ADP
ihlr-22948	306	161	these	these	DET
ihlr-22948	306	162	cases	case	NOUN
ihlr-22948	306	163	,	,	PUNCT
ihlr-22948	306	164	the	the	DET
ihlr-22948	306	165	research	research	NOUN
ihlr-22948	306	166	is	be	AUX
ihlr-22948	306	167	covered	cover	VERB
ihlr-22948	306	168	by	by	ADP
ihlr-22948	306	169	the	the	DET
ihlr-22948	306	170	hipaa	hipaa	NOUN
ihlr-22948	306	171	privacy	privacy	NOUN
ihlr-22948	306	172	and	and	CCONJ
ihlr-22948	306	173	security	security	NOUN
ihlr-22948	306	174	rule	rule	NOUN
ihlr-22948	306	175	,	,	PUNCT
ihlr-22948	306	176	described	describe	VERB
ihlr-22948	306	177	below	below	ADV
ihlr-22948	306	178	.	.	PUNCT
ihlr-22948	307	1	under	under	ADP
ihlr-22948	307	2	the	the	DET
ihlr-22948	307	3	common	common	ADJ
ihlr-22948	307	4	rule	rule	NOUN
ihlr-22948	307	5	,	,	PUNCT
ihlr-22948	307	6	when	when	SCONJ
ihlr-22948	307	7	registries	registry	NOUN
ihlr-22948	307	8	engage	engage	VERB
ihlr-22948	307	9	in	in	ADP
ihlr-22948	307	10	research	research	NOUN
ihlr-22948	307	11	with	with	ADP
ihlr-22948	307	12	identifiable	identifiable	ADJ
ihlr-22948	307	13	human	human	ADJ
ihlr-22948	307	14	subjects	subject	NOUN
ihlr-22948	307	15	,	,	PUNCT
ihlr-22948	307	16	consent	consent	NOUN
ihlr-22948	307	17	is	be	AUX
ihlr-22948	307	18	required	require	VERB
ihlr-22948	307	19	unless	unless	SCONJ
ihlr-22948	307	20	the	the	DET
ihlr-22948	307	21	research	research	NOUN
ihlr-22948	307	22	meets	meet	VERB
ihlr-22948	307	23	the	the	DET
ihlr-22948	307	24	requirements	requirement	NOUN
ihlr-22948	307	25	for	for	ADP
ihlr-22948	307	26	waiver	waiver	NOUN
ihlr-22948	307	27	of	of	ADP
ihlr-22948	307	28	consent.64	consent.64	NOUN
ihlr-22948	307	29	these	these	DET
ihlr-22948	307	30	requirements	requirement	NOUN
ihlr-22948	307	31	are	be	AUX
ihlr-22948	307	32	that	that	SCONJ
ihlr-22948	307	33	the	the	DET
ihlr-22948	307	34	research	research	NOUN
ihlr-22948	307	35	poses	pose	VERB
ihlr-22948	307	36	no	no	ADV
ihlr-22948	307	37	more	more	ADJ
ihlr-22948	307	38	than	than	ADP
ihlr-22948	307	39	minimal	minimal	ADJ
ihlr-22948	307	40	risk	risk	NOUN
ihlr-22948	307	41	,	,	PUNCT
ihlr-22948	307	42	could	could	AUX
ihlr-22948	307	43	not	not	PART
ihlr-22948	307	44	be	be	AUX
ihlr-22948	307	45	practicably	practicably	ADV
ihlr-22948	307	46	carried	carry	VERB
ihlr-22948	307	47	out	out	ADP
ihlr-22948	307	48	without	without	ADP
ihlr-22948	307	49	the	the	DET
ihlr-22948	307	50	waiver	waiver	NOUN
ihlr-22948	307	51	or	or	CCONJ
ihlr-22948	307	52	without	without	ADP
ihlr-22948	307	53	the	the	DET
ihlr-22948	307	54	use	use	NOUN
ihlr-22948	307	55	of	of	ADP
ihlr-22948	307	56	the	the	DET
ihlr-22948	307	57	information	information	NOUN
ihlr-22948	307	58	in	in	ADP
ihlr-22948	307	59	identifiable	identifiable	ADJ
ihlr-22948	307	60	form	form	NOUN
ihlr-22948	307	61	,	,	PUNCT
ihlr-22948	307	62	and	and	CCONJ
ihlr-22948	307	63	will	will	AUX
ihlr-22948	307	64	not	not	PART
ihlr-22948	307	65	adversely	adversely	ADV
ihlr-22948	307	66	affect	affect	VERB
ihlr-22948	307	67	the	the	DET
ihlr-22948	307	68	rights	right	NOUN
ihlr-22948	307	69	or	or	CCONJ
ihlr-22948	307	70	welfare	welfare	NOUN
ihlr-22948	307	71	of	of	ADP
ihlr-22948	307	72	the	the	DET
ihlr-22948	307	73	subject.65	subject.65	NOUN
ihlr-22948	307	74	in	in	ADP
ihlr-22948	307	75	addition	addition	NOUN
ihlr-22948	307	76	,	,	PUNCT
ihlr-22948	307	77	any	any	DET
ihlr-22948	307	78	pertinent	pertinent	ADJ
ihlr-22948	307	79	information	information	NOUN
ihlr-22948	307	80	should	should	AUX
ihlr-22948	307	81	be	be	AUX
ihlr-22948	307	82	provided	provide	VERB
ihlr-22948	307	83	to	to	ADP
ihlr-22948	307	84	subjects	subject	NOUN
ihlr-22948	307	85	after	after	SCONJ
ihlr-22948	307	86	the	the	DET
ihlr-22948	307	87	research	research	NOUN
ihlr-22948	307	88	has	have	AUX
ihlr-22948	307	89	been	be	AUX
ihlr-22948	307	90	conducted	conduct	VERB
ihlr-22948	307	91	,	,	PUNCT
ihlr-22948	307	92	if	if	SCONJ
ihlr-22948	307	93	providing	provide	VERB
ihlr-22948	307	94	59	59	NUM
ihlr-22948	307	95	.	.	PUNCT
ihlr-22948	308	1	45	45	NUM
ihlr-22948	308	2	c.f.r	c.f.r	NOUN
ihlr-22948	308	3	.	.	PUNCT
ihlr-22948	309	1	§	§	PROPN
ihlr-22948	309	2	46.102(l	46.102(l	PROPN
ihlr-22948	309	3	)	)	PUNCT
ihlr-22948	309	4	(	(	PUNCT
ihlr-22948	309	5	2018	2018	NUM
ihlr-22948	309	6	)	)	PUNCT
ihlr-22948	309	7	.	.	PUNCT
ihlr-22948	310	1	60	60	NUM
ihlr-22948	310	2	.	.	X
ihlr-22948	311	1	45	45	NUM
ihlr-22948	311	2	c.f.r	c.f.r	NOUN
ihlr-22948	311	3	.	.	PUNCT
ihlr-22948	312	1	§	§	PROPN
ihlr-22948	312	2	46.102(l)(2	46.102(l)(2	PROPN
ihlr-22948	312	3	)	)	PUNCT
ihlr-22948	312	4	(	(	PUNCT
ihlr-22948	312	5	2018	2018	NUM
ihlr-22948	312	6	)	)	PUNCT
ihlr-22948	312	7	.	.	PUNCT
ihlr-22948	313	1	61	61	NUM
ihlr-22948	313	2	.	.	X
ihlr-22948	313	3	45	45	NUM
ihlr-22948	313	4	c.f.r	c.f.r	NOUN
ihlr-22948	313	5	.	.	PUNCT
ihlr-22948	314	1	§	§	PROPN
ihlr-22948	314	2	46.102(e)(1)(i)-(ii	46.102(e)(1)(i)-(ii	NUM
ihlr-22948	314	3	)	)	PUNCT
ihlr-22948	314	4	(	(	PUNCT
ihlr-22948	314	5	2018	2018	NUM
ihlr-22948	314	6	)	)	PUNCT
ihlr-22948	314	7	.	.	PUNCT
ihlr-22948	315	1	62	62	NUM
ihlr-22948	315	2	.	.	X
ihlr-22948	316	1	45	45	NUM
ihlr-22948	316	2	c.f.r	c.f.r	NOUN
ihlr-22948	316	3	.	.	PUNCT
ihlr-22948	317	1	§	§	PROPN
ihlr-22948	317	2	46.101(a	46.101(a	PROPN
ihlr-22948	317	3	)	)	PUNCT
ihlr-22948	317	4	(	(	PUNCT
ihlr-22948	317	5	2018	2018	NUM
ihlr-22948	317	6	)	)	PUNCT
ihlr-22948	317	7	.	.	PUNCT
ihlr-22948	318	1	63	63	NUM
ihlr-22948	318	2	.	.	X
ihlr-22948	318	3	45	45	NUM
ihlr-22948	318	4	c.f.r	c.f.r	NOUN
ihlr-22948	318	5	.	.	PUNCT
ihlr-22948	319	1	§	§	PROPN
ihlr-22948	319	2	46.104(d)(4)(ii	46.104(d)(4)(ii	PROPN
ihlr-22948	319	3	)	)	PUNCT
ihlr-22948	319	4	(	(	PUNCT
ihlr-22948	319	5	2018	2018	NUM
ihlr-22948	319	6	)	)	PUNCT
ihlr-22948	319	7	.	.	PUNCT
ihlr-22948	320	1	64	64	NUM
ihlr-22948	320	2	.	.	X
ihlr-22948	321	1	45	45	NUM
ihlr-22948	321	2	c.f.r	c.f.r	NOUN
ihlr-22948	321	3	.	.	PUNCT
ihlr-22948	322	1	§	§	PROPN
ihlr-22948	322	2	46.111(a)(4	46.111(a)(4	NUM
ihlr-22948	322	3	)	)	PUNCT
ihlr-22948	322	4	(	(	PUNCT
ihlr-22948	322	5	2018	2018	NUM
ihlr-22948	322	6	)	)	PUNCT
ihlr-22948	322	7	.	.	PUNCT
ihlr-22948	323	1	65	65	NUM
ihlr-22948	323	2	.	.	NOUN
ihlr-22948	324	1	45	45	NUM
ihlr-22948	324	2	c.f.r	c.f.r	NOUN
ihlr-22948	324	3	.	.	PUNCT
ihlr-22948	325	1	§	§	PROPN
ihlr-22948	325	2	46.116(f)(3)(i)-(iv	46.116(f)(3)(i)-(iv	NUM
ihlr-22948	325	3	)	)	PUNCT
ihlr-22948	325	4	(	(	PUNCT
ihlr-22948	325	5	2018	2018	NUM
ihlr-22948	325	6	)	)	PUNCT
ihlr-22948	325	7	.	.	PUNCT
ihlr-22948	326	1	56	56	NUM
ihlr-22948	326	2	indiana	indiana	PROPN
ihlr-22948	326	3	health	health	PROPN
ihlr-22948	326	4	law	law	NOUN
ihlr-22948	326	5	review	review	NOUN
ihlr-22948	326	6	[	[	X
ihlr-22948	326	7	vol	vol	NOUN
ihlr-22948	326	8	.	.	PUNCT
ihlr-22948	326	9	16:43	16:43	NUM
ihlr-22948	326	10	this	this	DET
ihlr-22948	326	11	information	information	NOUN
ihlr-22948	326	12	is	be	AUX
ihlr-22948	326	13	appropriate.66	appropriate.66	NOUN
ihlr-22948	326	14	consent	consent	NOUN
ihlr-22948	326	15	must	must	AUX
ihlr-22948	326	16	include	include	VERB
ihlr-22948	326	17	the	the	DET
ihlr-22948	326	18	risks	risk	NOUN
ihlr-22948	326	19	and	and	CCONJ
ihlr-22948	326	20	benefits	benefit	NOUN
ihlr-22948	326	21	of	of	ADP
ihlr-22948	326	22	the	the	DET
ihlr-22948	326	23	research	research	NOUN
ihlr-22948	326	24	,	,	PUNCT
ihlr-22948	326	25	including	include	VERB
ihlr-22948	326	26	risks	risk	NOUN
ihlr-22948	326	27	of	of	ADP
ihlr-22948	326	28	loss	loss	NOUN
ihlr-22948	326	29	of	of	ADP
ihlr-22948	326	30	confidentiality	confidentiality	NOUN
ihlr-22948	326	31	;	;	PUNCT
ihlr-22948	326	32	the	the	DET
ihlr-22948	326	33	extent	extent	NOUN
ihlr-22948	326	34	to	to	PART
ihlr-22948	326	35	which	which	PRON
ihlr-22948	326	36	the	the	DET
ihlr-22948	326	37	confidentiality	confidentiality	NOUN
ihlr-22948	326	38	of	of	ADP
ihlr-22948	326	39	records	record	NOUN
ihlr-22948	326	40	will	will	AUX
ihlr-22948	326	41	be	be	AUX
ihlr-22948	326	42	maintained	maintain	VERB
ihlr-22948	326	43	must	must	AUX
ihlr-22948	326	44	be	be	AUX
ihlr-22948	326	45	stated	state	VERB
ihlr-22948	326	46	clearly	clearly	ADV
ihlr-22948	326	47	as	as	ADP
ihlr-22948	326	48	well.67	well.67	NOUN
ihlr-22948	326	49	for	for	SCONJ
ihlr-22948	326	50	the	the	DET
ihlr-22948	326	51	information	information	NOUN
ihlr-22948	326	52	to	to	PART
ihlr-22948	326	53	be	be	AUX
ihlr-22948	326	54	stripped	strip	VERB
ihlr-22948	326	55	of	of	ADP
ihlr-22948	326	56	identifiers	identifier	NOUN
ihlr-22948	326	57	and	and	CCONJ
ihlr-22948	326	58	then	then	ADV
ihlr-22948	326	59	reused	reuse	VERB
ihlr-22948	326	60	in	in	ADP
ihlr-22948	326	61	additional	additional	ADJ
ihlr-22948	326	62	research	research	NOUN
ihlr-22948	326	63	without	without	ADP
ihlr-22948	326	64	additional	additional	ADJ
ihlr-22948	326	65	informed	informed	ADJ
ihlr-22948	326	66	consent	consent	NOUN
ihlr-22948	326	67	,	,	PUNCT
ihlr-22948	326	68	this	this	DET
ihlr-22948	326	69	option	option	NOUN
ihlr-22948	326	70	must	must	AUX
ihlr-22948	326	71	be	be	AUX
ihlr-22948	326	72	clearly	clearly	ADV
ihlr-22948	326	73	stated	state	VERB
ihlr-22948	326	74	in	in	ADP
ihlr-22948	326	75	the	the	DET
ihlr-22948	326	76	consent	consent	NOUN
ihlr-22948	326	77	form.68	form.68	NOUN
ihlr-22948	326	78	the	the	DET
ihlr-22948	326	79	common	common	ADJ
ihlr-22948	326	80	rule	rule	NOUN
ihlr-22948	326	81	now	now	ADV
ihlr-22948	326	82	also	also	ADV
ihlr-22948	326	83	permits	permit	VERB
ihlr-22948	326	84	a	a	DET
ihlr-22948	326	85	form	form	NOUN
ihlr-22948	326	86	of	of	ADP
ihlr-22948	326	87	“	"	PUNCT
ihlr-22948	326	88	broad	broad	ADJ
ihlr-22948	326	89	consent	consent	NOUN
ihlr-22948	326	90	”	"	PUNCT
ihlr-22948	326	91	to	to	ADP
ihlr-22948	326	92	research	research	NOUN
ihlr-22948	326	93	involving	involve	VERB
ihlr-22948	326	94	the	the	DET
ihlr-22948	326	95	reuse	reuse	NOUN
ihlr-22948	326	96	of	of	ADP
ihlr-22948	326	97	identifiable	identifiable	ADJ
ihlr-22948	326	98	private	private	ADJ
ihlr-22948	326	99	information	information	NOUN
ihlr-22948	326	100	;	;	PUNCT
ihlr-22948	326	101	such	such	ADJ
ihlr-22948	326	102	broad	broad	ADJ
ihlr-22948	326	103	consent	consent	NOUN
ihlr-22948	326	104	must	must	AUX
ihlr-22948	326	105	include	include	VERB
ihlr-22948	326	106	a	a	DET
ihlr-22948	326	107	general	general	ADJ
ihlr-22948	326	108	description	description	NOUN
ihlr-22948	326	109	of	of	ADP
ihlr-22948	326	110	the	the	DET
ihlr-22948	326	111	types	type	NOUN
ihlr-22948	326	112	of	of	ADP
ihlr-22948	326	113	research	research	NOUN
ihlr-22948	326	114	that	that	PRON
ihlr-22948	326	115	may	may	AUX
ihlr-22948	326	116	be	be	AUX
ihlr-22948	326	117	conducted	conduct	VERB
ihlr-22948	326	118	,	,	PUNCT
ihlr-22948	326	119	a	a	DET
ihlr-22948	326	120	description	description	NOUN
ihlr-22948	326	121	of	of	ADP
ihlr-22948	326	122	the	the	DET
ihlr-22948	326	123	identifiable	identifiable	ADJ
ihlr-22948	326	124	information	information	NOUN
ihlr-22948	326	125	that	that	PRON
ihlr-22948	326	126	might	might	AUX
ihlr-22948	326	127	be	be	AUX
ihlr-22948	326	128	used	use	VERB
ihlr-22948	326	129	,	,	PUNCT
ihlr-22948	326	130	a	a	DET
ihlr-22948	326	131	description	description	NOUN
ihlr-22948	326	132	of	of	ADP
ihlr-22948	326	133	the	the	DET
ihlr-22948	326	134	time	time	NOUN
ihlr-22948	326	135	frame	frame	NOUN
ihlr-22948	326	136	in	in	ADP
ihlr-22948	326	137	which	which	PRON
ihlr-22948	326	138	it	it	PRON
ihlr-22948	326	139	is	be	AUX
ihlr-22948	326	140	anticipated	anticipate	VERB
ihlr-22948	326	141	that	that	SCONJ
ihlr-22948	326	142	the	the	DET
ihlr-22948	326	143	information	information	NOUN
ihlr-22948	326	144	will	will	AUX
ihlr-22948	326	145	be	be	AUX
ihlr-22948	326	146	maintained	maintain	VERB
ihlr-22948	326	147	and	and	CCONJ
ihlr-22948	326	148	used	use	VERB
ihlr-22948	326	149	(	(	PUNCT
ihlr-22948	326	150	a	a	DET
ihlr-22948	326	151	frame	frame	NOUN
ihlr-22948	326	152	that	that	PRON
ihlr-22948	326	153	explicitly	explicitly	ADV
ihlr-22948	326	154	may	may	AUX
ihlr-22948	326	155	be	be	AUX
ihlr-22948	326	156	indefinite	indefinite	ADJ
ihlr-22948	326	157	)	)	PUNCT
ihlr-22948	326	158	,	,	PUNCT
ihlr-22948	326	159	a	a	DET
ihlr-22948	326	160	description	description	NOUN
ihlr-22948	326	161	of	of	ADP
ihlr-22948	326	162	any	any	DET
ihlr-22948	326	163	plans	plan	NOUN
ihlr-22948	326	164	to	to	PART
ihlr-22948	326	165	share	share	VERB
ihlr-22948	326	166	information	information	NOUN
ihlr-22948	326	167	about	about	ADP
ihlr-22948	326	168	research	research	NOUN
ihlr-22948	326	169	and	and	CCONJ
ihlr-22948	326	170	its	its	PRON
ihlr-22948	326	171	results	result	NOUN
ihlr-22948	326	172	,	,	PUNCT
ihlr-22948	326	173	and	and	CCONJ
ihlr-22948	326	174	an	an	DET
ihlr-22948	326	175	explanation	explanation	NOUN
ihlr-22948	326	176	about	about	ADP
ihlr-22948	326	177	how	how	SCONJ
ihlr-22948	326	178	to	to	PART
ihlr-22948	326	179	contact	contact	VERB
ihlr-22948	326	180	researchers.69	researchers.69	VERB
ihlr-22948	326	181	the	the	DET
ihlr-22948	326	182	privacy	privacy	NOUN
ihlr-22948	326	183	of	of	ADP
ihlr-22948	326	184	subjects	subject	NOUN
ihlr-22948	326	185	and	and	CCONJ
ihlr-22948	326	186	the	the	DET
ihlr-22948	326	187	confidentiality	confidentiality	NOUN
ihlr-22948	326	188	of	of	ADP
ihlr-22948	326	189	data	datum	NOUN
ihlr-22948	326	190	must	must	AUX
ihlr-22948	326	191	also	also	ADV
ihlr-22948	326	192	be	be	AUX
ihlr-22948	326	193	appropriately	appropriately	ADV
ihlr-22948	326	194	maintained.70	maintained.70	ADJ
ihlr-22948	326	195	to	to	PART
ihlr-22948	326	196	summarize	summarize	VERB
ihlr-22948	326	197	,	,	PUNCT
ihlr-22948	326	198	the	the	DET
ihlr-22948	326	199	common	common	ADJ
ihlr-22948	326	200	rule	rule	NOUN
ihlr-22948	326	201	thus	thus	ADV
ihlr-22948	326	202	presents	present	VERB
ihlr-22948	326	203	a	a	DET
ihlr-22948	326	204	complex	complex	ADJ
ihlr-22948	326	205	set	set	NOUN
ihlr-22948	326	206	of	of	ADP
ihlr-22948	326	207	consent	consent	NOUN
ihlr-22948	326	208	requirements	requirement	NOUN
ihlr-22948	326	209	for	for	ADP
ihlr-22948	326	210	registries	registry	NOUN
ihlr-22948	326	211	conducting	conduct	VERB
ihlr-22948	326	212	research	research	NOUN
ihlr-22948	326	213	with	with	ADP
ihlr-22948	326	214	human	human	ADJ
ihlr-22948	326	215	subjects	subject	NOUN
ihlr-22948	326	216	.	.	PUNCT
ihlr-22948	327	1	registries	registry	NOUN
ihlr-22948	327	2	not	not	PART
ihlr-22948	327	3	conducting	conduct	VERB
ihlr-22948	327	4	research	research	NOUN
ihlr-22948	327	5	,	,	PUNCT
ihlr-22948	327	6	or	or	CCONJ
ihlr-22948	327	7	not	not	PART
ihlr-22948	327	8	containing	contain	VERB
ihlr-22948	327	9	information	information	NOUN
ihlr-22948	327	10	or	or	CCONJ
ihlr-22948	327	11	drawn	draw	VERB
ihlr-22948	327	12	from	from	ADP
ihlr-22948	327	13	information	information	NOUN
ihlr-22948	327	14	about	about	ADP
ihlr-22948	327	15	identifiable	identifiable	ADJ
ihlr-22948	327	16	human	human	ADJ
ihlr-22948	327	17	subjects	subject	NOUN
ihlr-22948	327	18	,	,	PUNCT
ihlr-22948	327	19	are	be	AUX
ihlr-22948	327	20	not	not	PART
ihlr-22948	327	21	covered	cover	VERB
ihlr-22948	327	22	by	by	ADP
ihlr-22948	327	23	the	the	DET
ihlr-22948	327	24	common	common	ADJ
ihlr-22948	327	25	rule	rule	NOUN
ihlr-22948	327	26	.	.	PUNCT
ihlr-22948	328	1	registries	registry	NOUN
ihlr-22948	328	2	may	may	AUX
ihlr-22948	328	3	also	also	ADV
ihlr-22948	328	4	be	be	AUX
ihlr-22948	328	5	beyond	beyond	ADP
ihlr-22948	328	6	the	the	DET
ihlr-22948	328	7	common	common	ADJ
ihlr-22948	328	8	rule	rule	NOUN
ihlr-22948	328	9	’s	’s	PART
ihlr-22948	328	10	coverage	coverage	NOUN
ihlr-22948	328	11	when	when	SCONJ
ihlr-22948	328	12	they	they	PRON
ihlr-22948	328	13	are	be	AUX
ihlr-22948	328	14	created	create	VERB
ihlr-22948	328	15	by	by	ADP
ihlr-22948	328	16	institutions	institution	NOUN
ihlr-22948	328	17	that	that	PRON
ihlr-22948	328	18	do	do	AUX
ihlr-22948	328	19	not	not	PART
ihlr-22948	328	20	receive	receive	VERB
ihlr-22948	328	21	federal	federal	ADJ
ihlr-22948	328	22	funding	funding	NOUN
ihlr-22948	328	23	and	and	CCONJ
ihlr-22948	328	24	are	be	AUX
ihlr-22948	328	25	not	not	PART
ihlr-22948	328	26	intended	intend	VERB
ihlr-22948	328	27	to	to	PART
ihlr-22948	328	28	be	be	AUX
ihlr-22948	328	29	used	use	VERB
ihlr-22948	328	30	in	in	ADP
ihlr-22948	328	31	the	the	DET
ihlr-22948	328	32	development	development	NOUN
ihlr-22948	328	33	of	of	ADP
ihlr-22948	328	34	products	product	NOUN
ihlr-22948	328	35	requiring	require	VERB
ihlr-22948	328	36	fda	fda	PROPN
ihlr-22948	328	37	approval	approval	NOUN
ihlr-22948	328	38	for	for	ADP
ihlr-22948	328	39	marketing	marketing	NOUN
ihlr-22948	328	40	.	.	PUNCT
ihlr-22948	329	1	informed	inform	VERB
ihlr-22948	329	2	consent	consent	NOUN
ihlr-22948	329	3	may	may	AUX
ihlr-22948	329	4	otherwise	otherwise	ADV
ihlr-22948	329	5	be	be	AUX
ihlr-22948	329	6	required	require	VERB
ihlr-22948	329	7	for	for	ADP
ihlr-22948	329	8	research	research	NOUN
ihlr-22948	329	9	involving	involve	VERB
ihlr-22948	329	10	information	information	NOUN
ihlr-22948	329	11	in	in	ADP
ihlr-22948	329	12	registries	registry	NOUN
ihlr-22948	329	13	—	—	PUNCT
ihlr-22948	329	14	but	but	CCONJ
ihlr-22948	329	15	this	this	DET
ihlr-22948	329	16	consent	consent	NOUN
ihlr-22948	329	17	may	may	AUX
ihlr-22948	329	18	be	be	AUX
ihlr-22948	329	19	broad	broad	ADJ
ihlr-22948	329	20	or	or	CCONJ
ihlr-22948	329	21	waived	waive	VERB
ihlr-22948	329	22	.	.	PUNCT
ihlr-22948	330	1	the	the	DET
ihlr-22948	330	2	consent	consent	NOUN
ihlr-22948	330	3	mechanisms	mechanism	NOUN
ihlr-22948	330	4	of	of	ADP
ihlr-22948	330	5	the	the	DET
ihlr-22948	330	6	common	common	ADJ
ihlr-22948	330	7	rule	rule	NOUN
ihlr-22948	330	8	are	be	AUX
ihlr-22948	330	9	thus	thus	ADV
ihlr-22948	330	10	limited	limit	VERB
ihlr-22948	330	11	at	at	ADP
ihlr-22948	330	12	best	good	ADJ
ihlr-22948	330	13	in	in	ADP
ihlr-22948	330	14	protecting	protect	VERB
ihlr-22948	330	15	the	the	DET
ihlr-22948	330	16	information	information	NOUN
ihlr-22948	330	17	in	in	ADP
ihlr-22948	330	18	registries	registry	NOUN
ihlr-22948	330	19	.	.	PUNCT
ihlr-22948	331	1	b.	b.	VERB
ihlr-22948	332	1	the	the	DET
ihlr-22948	332	2	hipaa	hipaa	NOUN
ihlr-22948	332	3	rules	rule	VERB
ihlr-22948	332	4	and	and	CCONJ
ihlr-22948	332	5	patient	patient	ADJ
ihlr-22948	332	6	registries	registry	NOUN
ihlr-22948	332	7	the	the	DET
ihlr-22948	332	8	hipaa	hipaa	NOUN
ihlr-22948	332	9	security	security	NOUN
ihlr-22948	332	10	and	and	CCONJ
ihlr-22948	332	11	privacy	privacy	NOUN
ihlr-22948	332	12	rules	rule	NOUN
ihlr-22948	332	13	apply	apply	VERB
ihlr-22948	332	14	to	to	ADP
ihlr-22948	332	15	identifiable	identifiable	ADJ
ihlr-22948	332	16	health	health	NOUN
ihlr-22948	332	17	information	information	NOUN
ihlr-22948	332	18	possessed	possess	VERB
ihlr-22948	332	19	by	by	ADP
ihlr-22948	332	20	hipaa	hipaa	NOUN
ihlr-22948	332	21	-	-	PUNCT
ihlr-22948	332	22	covered	cover	VERB
ihlr-22948	332	23	entities	entity	NOUN
ihlr-22948	332	24	.	.	PUNCT
ihlr-22948	333	1	these	these	DET
ihlr-22948	333	2	entities	entity	NOUN
ihlr-22948	333	3	are	be	AUX
ihlr-22948	333	4	health	health	NOUN
ihlr-22948	333	5	care	care	NOUN
ihlr-22948	333	6	providers	provider	NOUN
ihlr-22948	333	7	who	who	PRON
ihlr-22948	333	8	transmit	transmit	VERB
ihlr-22948	333	9	any	any	DET
ihlr-22948	333	10	information	information	NOUN
ihlr-22948	333	11	in	in	ADP
ihlr-22948	333	12	electronic	electronic	ADJ
ihlr-22948	333	13	form	form	NOUN
ihlr-22948	333	14	;	;	PUNCT
ihlr-22948	333	15	entities	entity	NOUN
ihlr-22948	333	16	also	also	ADV
ihlr-22948	333	17	include	include	VERB
ihlr-22948	333	18	health	health	NOUN
ihlr-22948	333	19	plans	plan	NOUN
ihlr-22948	333	20	and	and	CCONJ
ihlr-22948	333	21	health	health	NOUN
ihlr-22948	333	22	care	care	NOUN
ihlr-22948	333	23	clearinghouses.71	clearinghouses.71	PROPN
ihlr-22948	333	24	hipaa	hipaa	NOUN
ihlr-22948	333	25	also	also	ADV
ihlr-22948	333	26	covers	cover	VERB
ihlr-22948	333	27	the	the	DET
ihlr-22948	333	28	“	"	PUNCT
ihlr-22948	333	29	business	business	NOUN
ihlr-22948	333	30	associates	associate	NOUN
ihlr-22948	333	31	”	"	PUNCT
ihlr-22948	333	32	of	of	ADP
ihlr-22948	333	33	covered	covered	ADJ
ihlr-22948	333	34	entities	entity	NOUN
ihlr-22948	333	35	—	—	PUNCT
ihlr-22948	333	36	that	that	ADV
ihlr-22948	333	37	is	be	AUX
ihlr-22948	333	38	,	,	PUNCT
ihlr-22948	333	39	entities	entity	NOUN
ihlr-22948	333	40	receiving	receive	VERB
ihlr-22948	333	41	identifiable	identifiable	ADJ
ihlr-22948	333	42	health	health	NOUN
ihlr-22948	333	43	information	information	NOUN
ihlr-22948	333	44	from	from	ADP
ihlr-22948	333	45	covered	covered	ADJ
ihlr-22948	333	46	entities	entity	NOUN
ihlr-22948	333	47	in	in	ADP
ihlr-22948	333	48	order	order	NOUN
ihlr-22948	333	49	to	to	PART
ihlr-22948	333	50	provide	provide	VERB
ihlr-22948	333	51	functions	function	NOUN
ihlr-22948	333	52	such	such	ADJ
ihlr-22948	333	53	as	as	ADP
ihlr-22948	333	54	cost	cost	NOUN
ihlr-22948	333	55	analytics	analytic	NOUN
ihlr-22948	333	56	,	,	PUNCT
ihlr-22948	333	57	quality	quality	NOUN
ihlr-22948	333	58	of	of	ADP
ihlr-22948	333	59	care	care	NOUN
ihlr-22948	333	60	analytics	analytic	NOUN
ihlr-22948	333	61	,	,	PUNCT
ihlr-22948	333	62	legal	legal	ADJ
ihlr-22948	333	63	advice	advice	NOUN
ihlr-22948	333	64	,	,	PUNCT
ihlr-22948	333	65	accounting	accounting	NOUN
ihlr-22948	333	66	services	service	NOUN
ihlr-22948	333	67	or	or	CCONJ
ihlr-22948	333	68	a	a	DET
ihlr-22948	333	69	host	host	NOUN
ihlr-22948	333	70	of	of	ADP
ihlr-22948	333	71	other	other	ADJ
ihlr-22948	333	72	business	business	NOUN
ihlr-22948	333	73	functions	function	NOUN
ihlr-22948	333	74	required	require	VERB
ihlr-22948	333	75	by	by	ADP
ihlr-22948	333	76	health	health	NOUN
ihlr-22948	333	77	care	care	NOUN
ihlr-22948	333	78	organizations.72	organizations.72	NOUN
ihlr-22948	333	79	entities	entity	NOUN
ihlr-22948	333	80	not	not	PART
ihlr-22948	333	81	included	include	VERB
ihlr-22948	333	82	in	in	ADP
ihlr-22948	333	83	these	these	DET
ihlr-22948	333	84	definitions	definition	NOUN
ihlr-22948	333	85	are	be	AUX
ihlr-22948	333	86	not	not	PART
ihlr-22948	333	87	covered	cover	VERB
ihlr-22948	333	88	by	by	ADP
ihlr-22948	333	89	the	the	DET
ihlr-22948	333	90	hipaa	hipaa	NOUN
ihlr-22948	333	91	rules	rule	NOUN
ihlr-22948	333	92	.	.	PUNCT
ihlr-22948	334	1	when	when	SCONJ
ihlr-22948	334	2	66	66	NUM
ihlr-22948	334	3	.	.	NOUN
ihlr-22948	334	4	45	45	NUM
ihlr-22948	334	5	c.f.r	c.f.r	NOUN
ihlr-22948	334	6	.	.	PUNCT
ihlr-22948	335	1	§	§	PROPN
ihlr-22948	335	2	46.116(f)(3)(v	46.116(f)(3)(v	NUM
ihlr-22948	335	3	)	)	PUNCT
ihlr-22948	335	4	(	(	PUNCT
ihlr-22948	335	5	2018	2018	NUM
ihlr-22948	335	6	)	)	PUNCT
ihlr-22948	335	7	.	.	PUNCT
ihlr-22948	336	1	67	67	NUM
ihlr-22948	336	2	.	.	NOUN
ihlr-22948	337	1	45	45	NUM
ihlr-22948	337	2	c.f.r	c.f.r	NOUN
ihlr-22948	337	3	.	.	PUNCT
ihlr-22948	338	1	§	§	PROPN
ihlr-22948	338	2	46.116(b)(2	46.116(b)(2	NUM
ihlr-22948	338	3	)	)	PUNCT
ihlr-22948	338	4	,	,	PUNCT
ihlr-22948	338	5	(	(	PUNCT
ihlr-22948	338	6	5	5	X
ihlr-22948	338	7	)	)	PUNCT
ihlr-22948	338	8	(	(	PUNCT
ihlr-22948	338	9	2018	2018	NUM
ihlr-22948	338	10	)	)	PUNCT
ihlr-22948	338	11	.	.	PUNCT
ihlr-22948	339	1	68	68	NUM
ihlr-22948	339	2	.	.	X
ihlr-22948	339	3	45	45	NUM
ihlr-22948	339	4	c.f.r	c.f.r	NOUN
ihlr-22948	339	5	.	.	PUNCT
ihlr-22948	340	1	§	§	PROPN
ihlr-22948	340	2	46.116(b)(9)(i	46.116(b)(9)(i	PROPN
ihlr-22948	340	3	)	)	PUNCT
ihlr-22948	340	4	(	(	PUNCT
ihlr-22948	340	5	2018	2018	NUM
ihlr-22948	340	6	)	)	PUNCT
ihlr-22948	340	7	.	.	PUNCT
ihlr-22948	341	1	69	69	NUM
ihlr-22948	341	2	.	.	X
ihlr-22948	342	1	45	45	NUM
ihlr-22948	342	2	c.f.r	c.f.r	NOUN
ihlr-22948	342	3	.	.	PUNCT
ihlr-22948	343	1	§	§	PROPN
ihlr-22948	343	2	46.116(d)(2)-(7	46.116(d)(2)-(7	PROPN
ihlr-22948	343	3	)	)	PUNCT
ihlr-22948	343	4	(	(	PUNCT
ihlr-22948	343	5	2018	2018	NUM
ihlr-22948	343	6	)	)	PUNCT
ihlr-22948	343	7	.	.	PUNCT
ihlr-22948	344	1	70	70	NUM
ihlr-22948	344	2	.	.	X
ihlr-22948	344	3	45	45	NUM
ihlr-22948	344	4	c.f.r	c.f.r	NOUN
ihlr-22948	344	5	.	.	PUNCT
ihlr-22948	345	1	§	§	PROPN
ihlr-22948	345	2	46.111(a)(7	46.111(a)(7	PROPN
ihlr-22948	345	3	)	)	PUNCT
ihlr-22948	345	4	(	(	PUNCT
ihlr-22948	345	5	2018	2018	NUM
ihlr-22948	345	6	)	)	PUNCT
ihlr-22948	345	7	.	.	PUNCT
ihlr-22948	346	1	71	71	NUM
ihlr-22948	346	2	.	.	X
ihlr-22948	346	3	45	45	NUM
ihlr-22948	346	4	c.f.r	c.f.r	NOUN
ihlr-22948	346	5	.	.	PUNCT
ihlr-22948	347	1	§	§	PROPN
ihlr-22948	347	2	160.103	160.103	NUM
ihlr-22948	347	3	(	(	PUNCT
ihlr-22948	347	4	2018	2018	NUM
ihlr-22948	347	5	)	)	PUNCT
ihlr-22948	347	6	.	.	PUNCT
ihlr-22948	348	1	72	72	NUM
ihlr-22948	348	2	.	.	PUNCT
ihlr-22948	349	1	i	i	PRON
ihlr-22948	349	2	d.	d.	PROPN
ihlr-22948	349	3	2018	2018	NUM
ihlr-22948	349	4	]	]	PUNCT
ihlr-22948	349	5	patient	patient	ADJ
ihlr-22948	349	6	registries	registry	NOUN
ihlr-22948	349	7	and	and	CCONJ
ihlr-22948	349	8	their	their	PRON
ihlr-22948	349	9	governance	governance	NOUN
ihlr-22948	349	10	57	57	NUM
ihlr-22948	349	11	information	information	NOUN
ihlr-22948	349	12	is	be	AUX
ihlr-22948	349	13	transferred	transfer	VERB
ihlr-22948	349	14	out	out	ADP
ihlr-22948	349	15	of	of	ADP
ihlr-22948	349	16	the	the	DET
ihlr-22948	349	17	hipaa	hipaa	NOUN
ihlr-22948	349	18	domain	domain	NOUN
ihlr-22948	349	19	—	—	PUNCT
ihlr-22948	349	20	for	for	ADP
ihlr-22948	349	21	example	example	NOUN
ihlr-22948	349	22	by	by	ADP
ihlr-22948	349	23	a	a	DET
ihlr-22948	349	24	patient	patient	ADJ
ihlr-22948	349	25	request	request	NOUN
ihlr-22948	349	26	for	for	ADP
ihlr-22948	349	27	records	record	NOUN
ihlr-22948	349	28	to	to	PART
ihlr-22948	349	29	be	be	AUX
ihlr-22948	349	30	transferred	transfer	VERB
ihlr-22948	349	31	—	—	PUNCT
ihlr-22948	349	32	the	the	DET
ihlr-22948	349	33	transferred	transfer	VERB
ihlr-22948	349	34	information	information	NOUN
ihlr-22948	349	35	no	no	ADV
ihlr-22948	349	36	longer	long	ADV
ihlr-22948	349	37	has	have	VERB
ihlr-22948	349	38	the	the	DET
ihlr-22948	349	39	protections	protection	NOUN
ihlr-22948	349	40	accorded	accord	VERB
ihlr-22948	349	41	by	by	ADP
ihlr-22948	349	42	hipaa	hipaa	NOUN
ihlr-22948	349	43	,	,	PUNCT
ihlr-22948	349	44	although	although	SCONJ
ihlr-22948	349	45	the	the	DET
ihlr-22948	349	46	original	original	ADJ
ihlr-22948	349	47	copy	copy	NOUN
ihlr-22948	349	48	possessed	possess	VERB
ihlr-22948	349	49	by	by	ADP
ihlr-22948	349	50	the	the	DET
ihlr-22948	349	51	covered	covered	ADJ
ihlr-22948	349	52	entity	entity	NOUN
ihlr-22948	349	53	would	would	AUX
ihlr-22948	349	54	continue	continue	VERB
ihlr-22948	349	55	to	to	PART
ihlr-22948	349	56	be	be	AUX
ihlr-22948	349	57	protected	protect	VERB
ihlr-22948	349	58	.	.	PUNCT
ihlr-22948	350	1	under	under	ADP
ihlr-22948	350	2	the	the	DET
ihlr-22948	350	3	hipaa	hipaa	NOUN
ihlr-22948	350	4	security	security	NOUN
ihlr-22948	350	5	rule	rule	NOUN
ihlr-22948	350	6	,	,	PUNCT
ihlr-22948	350	7	covered	cover	VERB
ihlr-22948	350	8	entities	entity	NOUN
ihlr-22948	350	9	must	must	AUX
ihlr-22948	350	10	perform	perform	VERB
ihlr-22948	350	11	an	an	DET
ihlr-22948	350	12	assessment	assessment	NOUN
ihlr-22948	350	13	about	about	ADP
ihlr-22948	350	14	security	security	NOUN
ihlr-22948	350	15	risks	risk	NOUN
ihlr-22948	350	16	and	and	CCONJ
ihlr-22948	350	17	implement	implement	VERB
ihlr-22948	350	18	reasonable	reasonable	ADJ
ihlr-22948	350	19	security	security	NOUN
ihlr-22948	350	20	plans.73	plans.73	PROPN
ihlr-22948	350	21	security	security	NOUN
ihlr-22948	350	22	has	have	VERB
ihlr-22948	350	23	three	three	NUM
ihlr-22948	350	24	aspects	aspect	NOUN
ihlr-22948	350	25	.	.	PUNCT
ihlr-22948	351	1	the	the	DET
ihlr-22948	351	2	first	first	ADJ
ihlr-22948	351	3	is	be	AUX
ihlr-22948	351	4	administrative	administrative	ADJ
ihlr-22948	351	5	security	security	NOUN
ihlr-22948	351	6	:	:	PUNCT
ihlr-22948	351	7	proper	proper	ADJ
ihlr-22948	351	8	training	training	NOUN
ihlr-22948	351	9	of	of	ADP
ihlr-22948	351	10	staff	staff	NOUN
ihlr-22948	351	11	so	so	SCONJ
ihlr-22948	351	12	that	that	SCONJ
ihlr-22948	351	13	they	they	PRON
ihlr-22948	351	14	do	do	AUX
ihlr-22948	351	15	not	not	PART
ihlr-22948	351	16	risk	risk	VERB
ihlr-22948	351	17	security	security	NOUN
ihlr-22948	351	18	breaches	breach	NOUN
ihlr-22948	351	19	,	,	PUNCT
ihlr-22948	351	20	for	for	ADP
ihlr-22948	351	21	example	example	NOUN
ihlr-22948	351	22	,	,	PUNCT
ihlr-22948	351	23	sharing	share	VERB
ihlr-22948	351	24	passwords	password	NOUN
ihlr-22948	351	25	,	,	PUNCT
ihlr-22948	351	26	using	use	VERB
ihlr-22948	351	27	very	very	ADV
ihlr-22948	351	28	weak	weak	ADJ
ihlr-22948	351	29	passwords	password	NOUN
ihlr-22948	351	30	,	,	PUNCT
ihlr-22948	351	31	or	or	CCONJ
ihlr-22948	351	32	letting	let	VERB
ihlr-22948	351	33	people	people	NOUN
ihlr-22948	351	34	into	into	ADP
ihlr-22948	351	35	files	file	NOUN
ihlr-22948	351	36	who	who	PRON
ihlr-22948	351	37	have	have	AUX
ihlr-22948	351	38	not	not	PART
ihlr-22948	351	39	been	be	AUX
ihlr-22948	351	40	properly	properly	ADV
ihlr-22948	351	41	authenticated.74	authenticated.74	VERB
ihlr-22948	351	42	a	a	DET
ihlr-22948	351	43	second	second	NOUN
ihlr-22948	351	44	is	be	AUX
ihlr-22948	351	45	physical	physical	ADJ
ihlr-22948	351	46	security	security	NOUN
ihlr-22948	351	47	:	:	PUNCT
ihlr-22948	351	48	the	the	DET
ihlr-22948	351	49	data	datum	NOUN
ihlr-22948	351	50	from	from	ADP
ihlr-22948	351	51	destruction	destruction	NOUN
ihlr-22948	351	52	or	or	CCONJ
ihlr-22948	351	53	loss	loss	NOUN
ihlr-22948	351	54	,	,	PUNCT
ihlr-22948	351	55	such	such	ADJ
ihlr-22948	351	56	as	as	ADP
ihlr-22948	351	57	when	when	SCONJ
ihlr-22948	351	58	the	the	DET
ihlr-22948	351	59	data	datum	NOUN
ihlr-22948	351	60	are	be	AUX
ihlr-22948	351	61	stored	store	VERB
ihlr-22948	351	62	on	on	ADP
ihlr-22948	351	63	a	a	DET
ihlr-22948	351	64	portable	portable	ADJ
ihlr-22948	351	65	device	device	NOUN
ihlr-22948	351	66	,	,	PUNCT
ihlr-22948	351	67	and	and	CCONJ
ihlr-22948	351	68	the	the	DET
ihlr-22948	351	69	portable	portable	ADJ
ihlr-22948	351	70	device	device	NOUN
ihlr-22948	351	71	is	be	AUX
ihlr-22948	351	72	taken	take	VERB
ihlr-22948	351	73	where	where	SCONJ
ihlr-22948	351	74	it	it	PRON
ihlr-22948	351	75	can	can	AUX
ihlr-22948	351	76	be	be	AUX
ihlr-22948	351	77	lost	lose	VERB
ihlr-22948	351	78	or	or	CCONJ
ihlr-22948	351	79	stolen.75	stolen.75	VERB
ihlr-22948	351	80	the	the	DET
ihlr-22948	351	81	third	third	ADJ
ihlr-22948	351	82	is	be	AUX
ihlr-22948	351	83	technical	technical	ADJ
ihlr-22948	351	84	security	security	NOUN
ihlr-22948	351	85	which	which	PRON
ihlr-22948	351	86	is	be	AUX
ihlr-22948	351	87	achieved	achieve	VERB
ihlr-22948	351	88	by	by	ADP
ihlr-22948	351	89	methods	method	NOUN
ihlr-22948	351	90	such	such	ADJ
ihlr-22948	351	91	as	as	ADP
ihlr-22948	351	92	encryption	encryption	NOUN
ihlr-22948	351	93	and	and	CCONJ
ihlr-22948	351	94	automatic	automatic	ADJ
ihlr-22948	351	95	logoff.76	logoff.76	PROPN
ihlr-22948	351	96	the	the	DET
ihlr-22948	351	97	hipaa	hipaa	NOUN
ihlr-22948	351	98	privacy	privacy	NOUN
ihlr-22948	351	99	rule	rule	NOUN
ihlr-22948	351	100	also	also	ADV
ihlr-22948	351	101	provides	provide	VERB
ihlr-22948	351	102	significant	significant	ADJ
ihlr-22948	351	103	protections	protection	NOUN
ihlr-22948	351	104	for	for	ADP
ihlr-22948	351	105	health	health	NOUN
ihlr-22948	351	106	information	information	NOUN
ihlr-22948	351	107	that	that	PRON
ihlr-22948	351	108	it	it	PRON
ihlr-22948	351	109	covers	cover	VERB
ihlr-22948	351	110	.	.	PUNCT
ihlr-22948	352	1	most	most	ADV
ihlr-22948	352	2	importantly	importantly	ADV
ihlr-22948	352	3	for	for	ADP
ihlr-22948	352	4	this	this	DET
ihlr-22948	352	5	discussion	discussion	NOUN
ihlr-22948	352	6	,	,	PUNCT
ihlr-22948	352	7	patients	patient	NOUN
ihlr-22948	352	8	have	have	VERB
ihlr-22948	352	9	rights	right	NOUN
ihlr-22948	352	10	to	to	PART
ihlr-22948	352	11	receive	receive	VERB
ihlr-22948	352	12	copies	copy	NOUN
ihlr-22948	352	13	of	of	ADP
ihlr-22948	352	14	most	most	ADJ
ihlr-22948	352	15	of	of	ADP
ihlr-22948	352	16	their	their	PRON
ihlr-22948	352	17	records77	records77	NOUN
ihlr-22948	352	18	and	and	CCONJ
ihlr-22948	352	19	to	to	PART
ihlr-22948	352	20	request	request	VERB
ihlr-22948	352	21	amendments	amendment	NOUN
ihlr-22948	352	22	if	if	SCONJ
ihlr-22948	352	23	they	they	PRON
ihlr-22948	352	24	identify	identify	VERB
ihlr-22948	352	25	errors.78	errors.78	NOUN
ihlr-22948	352	26	authorization	authorization	NOUN
ihlr-22948	352	27	from	from	ADP
ihlr-22948	352	28	patients	patient	NOUN
ihlr-22948	352	29	is	be	AUX
ihlr-22948	352	30	required	require	VERB
ihlr-22948	352	31	if	if	SCONJ
ihlr-22948	352	32	information	information	NOUN
ihlr-22948	352	33	is	be	AUX
ihlr-22948	352	34	to	to	PART
ihlr-22948	352	35	be	be	AUX
ihlr-22948	352	36	used	use	VERB
ihlr-22948	352	37	in	in	ADP
ihlr-22948	352	38	research	research	NOUN
ihlr-22948	352	39	;	;	PUNCT
ihlr-22948	352	40	thus	thus	ADV
ihlr-22948	352	41	registry	registry	NOUN
ihlr-22948	352	42	research	research	NOUN
ihlr-22948	352	43	conducted	conduct	VERB
ihlr-22948	352	44	by	by	ADP
ihlr-22948	352	45	covered	covered	ADJ
ihlr-22948	352	46	entities	entity	NOUN
ihlr-22948	352	47	would	would	AUX
ihlr-22948	352	48	require	require	VERB
ihlr-22948	352	49	authorization.79	authorization.79	NOUN
ihlr-22948	352	50	authorization	authorization	NOUN
ihlr-22948	352	51	may	may	AUX
ihlr-22948	352	52	combine	combine	VERB
ihlr-22948	352	53	inclusion	inclusion	NOUN
ihlr-22948	352	54	in	in	ADP
ihlr-22948	352	55	the	the	DET
ihlr-22948	352	56	registry	registry	NOUN
ihlr-22948	352	57	with	with	ADP
ihlr-22948	352	58	participation	participation	NOUN
ihlr-22948	352	59	in	in	ADP
ihlr-22948	352	60	a	a	DET
ihlr-22948	352	61	given	give	VERB
ihlr-22948	352	62	research	research	NOUN
ihlr-22948	352	63	study.80	study.80	NOUN
ihlr-22948	352	64	on	on	ADP
ihlr-22948	352	65	the	the	DET
ihlr-22948	352	66	other	other	ADJ
ihlr-22948	352	67	side	side	NOUN
ihlr-22948	352	68	,	,	PUNCT
ihlr-22948	352	69	patient	patient	ADJ
ihlr-22948	352	70	authorization	authorization	NOUN
ihlr-22948	352	71	is	be	AUX
ihlr-22948	352	72	not	not	PART
ihlr-22948	352	73	required	require	VERB
ihlr-22948	352	74	for	for	ADP
ihlr-22948	352	75	covered	covered	ADJ
ihlr-22948	352	76	entities	entity	NOUN
ihlr-22948	352	77	to	to	PART
ihlr-22948	352	78	share	share	VERB
ihlr-22948	352	79	information	information	NOUN
ihlr-22948	352	80	with	with	ADP
ihlr-22948	352	81	public	public	ADJ
ihlr-22948	352	82	health	health	NOUN
ihlr-22948	352	83	as	as	SCONJ
ihlr-22948	352	84	required	require	VERB
ihlr-22948	352	85	by	by	ADP
ihlr-22948	352	86	law.81	law.81	PROPN
ihlr-22948	352	87	thus	thus	ADV
ihlr-22948	352	88	,	,	PUNCT
ihlr-22948	352	89	providers	provider	NOUN
ihlr-22948	352	90	need	need	AUX
ihlr-22948	352	91	not	not	PART
ihlr-22948	352	92	seek	seek	VERB
ihlr-22948	352	93	patient	patient	ADJ
ihlr-22948	352	94	authorization	authorization	NOUN
ihlr-22948	352	95	to	to	PART
ihlr-22948	352	96	report	report	VERB
ihlr-22948	352	97	information	information	NOUN
ihlr-22948	352	98	to	to	ADP
ihlr-22948	352	99	public	public	ADJ
ihlr-22948	352	100	health	health	NOUN
ihlr-22948	352	101	registries	registry	NOUN
ihlr-22948	352	102	in	in	ADP
ihlr-22948	352	103	a	a	DET
ihlr-22948	352	104	manner	manner	NOUN
ihlr-22948	352	105	that	that	PRON
ihlr-22948	352	106	is	be	AUX
ihlr-22948	352	107	legally	legally	ADV
ihlr-22948	352	108	required	require	VERB
ihlr-22948	352	109	.	.	PUNCT
ihlr-22948	353	1	authorization	authorization	NOUN
ihlr-22948	353	2	is	be	AUX
ihlr-22948	353	3	also	also	ADV
ihlr-22948	353	4	not	not	PART
ihlr-22948	353	5	required	require	VERB
ihlr-22948	353	6	for	for	ADP
ihlr-22948	353	7	treatment	treatment	NOUN
ihlr-22948	353	8	,	,	PUNCT
ihlr-22948	353	9	payment	payment	NOUN
ihlr-22948	353	10	,	,	PUNCT
ihlr-22948	353	11	or	or	CCONJ
ihlr-22948	353	12	health	health	NOUN
ihlr-22948	353	13	care	care	NOUN
ihlr-22948	353	14	operations;82	operations;82	ADV
ihlr-22948	353	15	thus	thus	ADV
ihlr-22948	353	16	registries	registry	NOUN
ihlr-22948	353	17	maintained	maintain	VERB
ihlr-22948	353	18	internally	internally	ADV
ihlr-22948	353	19	for	for	ADP
ihlr-22948	353	20	purposes	purpose	NOUN
ihlr-22948	353	21	such	such	ADJ
ihlr-22948	353	22	as	as	ADP
ihlr-22948	353	23	analysis	analysis	NOUN
ihlr-22948	353	24	of	of	ADP
ihlr-22948	353	25	cost	cost	NOUN
ihlr-22948	353	26	effectiveness	effectiveness	NOUN
ihlr-22948	353	27	do	do	AUX
ihlr-22948	353	28	not	not	PART
ihlr-22948	353	29	require	require	VERB
ihlr-22948	353	30	authorization	authorization	NOUN
ihlr-22948	353	31	.	.	PUNCT
ihlr-22948	354	1	finally	finally	ADV
ihlr-22948	354	2	,	,	PUNCT
ihlr-22948	354	3	information	information	NOUN
ihlr-22948	354	4	deidentified	deidentifie	VERB
ihlr-22948	354	5	to	to	ADP
ihlr-22948	354	6	hipaa	hipaa	NOUN
ihlr-22948	354	7	standards	standard	NOUN
ihlr-22948	354	8	is	be	AUX
ihlr-22948	354	9	no	no	ADV
ihlr-22948	354	10	longer	long	ADV
ihlr-22948	354	11	considered	consider	VERB
ihlr-22948	354	12	health	health	NOUN
ihlr-22948	354	13	information	information	NOUN
ihlr-22948	354	14	73	73	NUM
ihlr-22948	354	15	.	.	PUNCT
ihlr-22948	355	1	see	see	VERB
ihlr-22948	355	2	45	45	NUM
ihlr-22948	355	3	c.f.r	c.f.r	NOUN
ihlr-22948	355	4	.	.	PUNCT
ihlr-22948	356	1	§	§	PROPN
ihlr-22948	356	2	164.306(a)-(b	164.306(a)-(b	PROPN
ihlr-22948	356	3	)	)	PUNCT
ihlr-22948	356	4	(	(	PUNCT
ihlr-22948	356	5	2018	2018	NUM
ihlr-22948	356	6	)	)	PUNCT
ihlr-22948	356	7	.	.	PUNCT
ihlr-22948	357	1	74	74	X
ihlr-22948	357	2	.	.	PUNCT
ihlr-22948	358	1	see	see	VERB
ihlr-22948	358	2	45	45	NUM
ihlr-22948	358	3	c.f.r	c.f.r	NOUN
ihlr-22948	358	4	.	.	PUNCT
ihlr-22948	359	1	§	§	PROPN
ihlr-22948	359	2	164.308	164.308	NUM
ihlr-22948	359	3	(	(	PUNCT
ihlr-22948	359	4	2018	2018	NUM
ihlr-22948	359	5	)	)	PUNCT
ihlr-22948	359	6	.	.	PUNCT
ihlr-22948	360	1	75	75	NUM
ihlr-22948	360	2	.	.	PUNCT
ihlr-22948	360	3	see	see	VERB
ihlr-22948	360	4	45	45	NUM
ihlr-22948	360	5	c.f.r	c.f.r	NOUN
ihlr-22948	360	6	.	.	PUNCT
ihlr-22948	361	1	§	§	PROPN
ihlr-22948	361	2	164.310	164.310	NUM
ihlr-22948	361	3	(	(	PUNCT
ihlr-22948	361	4	2018	2018	NUM
ihlr-22948	361	5	)	)	PUNCT
ihlr-22948	361	6	.	.	PUNCT
ihlr-22948	362	1	76	76	NUM
ihlr-22948	362	2	.	.	PUNCT
ihlr-22948	363	1	see	see	VERB
ihlr-22948	363	2	45	45	NUM
ihlr-22948	363	3	c.f.r	c.f.r	NOUN
ihlr-22948	363	4	.	.	PUNCT
ihlr-22948	364	1	§	§	PROPN
ihlr-22948	364	2	164.312	164.312	PROPN
ihlr-22948	364	3	(	(	PUNCT
ihlr-22948	364	4	2018	2018	NUM
ihlr-22948	364	5	)	)	PUNCT
ihlr-22948	364	6	.	.	PUNCT
ihlr-22948	365	1	77	77	NUM
ihlr-22948	365	2	.	.	X
ihlr-22948	366	1	45	45	NUM
ihlr-22948	366	2	c.f.r	c.f.r	NOUN
ihlr-22948	366	3	.	.	PUNCT
ihlr-22948	367	1	§	§	PROPN
ihlr-22948	367	2	164.524(a	164.524(a	PROPN
ihlr-22948	367	3	)	)	PUNCT
ihlr-22948	367	4	(	(	PUNCT
ihlr-22948	367	5	2018	2018	NUM
ihlr-22948	367	6	)	)	PUNCT
ihlr-22948	367	7	.	.	PUNCT
ihlr-22948	368	1	this	this	DET
ihlr-22948	368	2	right	right	NOUN
ihlr-22948	368	3	extends	extend	VERB
ihlr-22948	368	4	only	only	ADV
ihlr-22948	368	5	to	to	ADP
ihlr-22948	368	6	information	information	NOUN
ihlr-22948	368	7	in	in	ADP
ihlr-22948	368	8	the	the	DET
ihlr-22948	368	9	“	"	PUNCT
ihlr-22948	368	10	designated	designate	VERB
ihlr-22948	368	11	record	record	NOUN
ihlr-22948	368	12	set	set	NOUN
ihlr-22948	368	13	”	"	PUNCT
ihlr-22948	368	14	and	and	CCONJ
ihlr-22948	368	15	excludes	exclude	VERB
ihlr-22948	368	16	psychotherapy	psychotherapy	NOUN
ihlr-22948	368	17	notes	note	NOUN
ihlr-22948	368	18	.	.	PUNCT
ihlr-22948	369	1	i	i	PRON
ihlr-22948	369	2	d.	d.	PROPN
ihlr-22948	369	3	78	78	NUM
ihlr-22948	369	4	.	.	PUNCT
ihlr-22948	370	1	45	45	NUM
ihlr-22948	370	2	c.f.r	c.f.r	NOUN
ihlr-22948	370	3	.	.	PUNCT
ihlr-22948	371	1	§	§	PROPN
ihlr-22948	371	2	164.526	164.526	NUM
ihlr-22948	371	3	(	(	PUNCT
ihlr-22948	371	4	2018	2018	NUM
ihlr-22948	371	5	)	)	PUNCT
ihlr-22948	371	6	.	.	PUNCT
ihlr-22948	372	1	79	79	NUM
ihlr-22948	372	2	.	.	X
ihlr-22948	373	1	45	45	NUM
ihlr-22948	373	2	c.f.r	c.f.r	NOUN
ihlr-22948	373	3	.	.	PUNCT
ihlr-22948	374	1	§	§	PROPN
ihlr-22948	374	2	164.508(a	164.508(a	NUM
ihlr-22948	374	3	)	)	PUNCT
ihlr-22948	374	4	(	(	PUNCT
ihlr-22948	374	5	2018	2018	NUM
ihlr-22948	374	6	)	)	PUNCT
ihlr-22948	374	7	.	.	PUNCT
ihlr-22948	375	1	80	80	NUM
ihlr-22948	375	2	.	.	X
ihlr-22948	376	1	45	45	NUM
ihlr-22948	376	2	c.f.r	c.f.r	NOUN
ihlr-22948	376	3	.	.	PUNCT
ihlr-22948	377	1	§	§	PROPN
ihlr-22948	377	2	164.508(b)(3	164.508(b)(3	NUM
ihlr-22948	377	3	)	)	PUNCT
ihlr-22948	377	4	(	(	PUNCT
ihlr-22948	377	5	2018	2018	NUM
ihlr-22948	377	6	)	)	PUNCT
ihlr-22948	377	7	.	.	PUNCT
ihlr-22948	378	1	however	however	ADV
ihlr-22948	378	2	,	,	PUNCT
ihlr-22948	378	3	such	such	ADJ
ihlr-22948	378	4	compound	compound	NOUN
ihlr-22948	378	5	authorizations	authorization	NOUN
ihlr-22948	378	6	must	must	AUX
ihlr-22948	378	7	be	be	AUX
ihlr-22948	378	8	careful	careful	ADJ
ihlr-22948	378	9	to	to	PART
ihlr-22948	378	10	distinguish	distinguish	VERB
ihlr-22948	378	11	situations	situation	NOUN
ihlr-22948	378	12	in	in	ADP
ihlr-22948	378	13	which	which	PRON
ihlr-22948	378	14	it	it	PRON
ihlr-22948	378	15	is	be	AUX
ihlr-22948	378	16	permissible	permissible	ADJ
ihlr-22948	378	17	to	to	PART
ihlr-22948	378	18	condition	condition	VERB
ihlr-22948	378	19	treatment	treatment	NOUN
ihlr-22948	378	20	on	on	ADP
ihlr-22948	378	21	authorization	authorization	NOUN
ihlr-22948	378	22	and	and	CCONJ
ihlr-22948	378	23	situations	situation	NOUN
ihlr-22948	378	24	in	in	ADP
ihlr-22948	378	25	which	which	PRON
ihlr-22948	378	26	it	it	PRON
ihlr-22948	378	27	is	be	AUX
ihlr-22948	378	28	not	not	PART
ihlr-22948	378	29	.	.	PUNCT
ihlr-22948	379	1	for	for	ADP
ihlr-22948	379	2	example	example	NOUN
ihlr-22948	379	3	,	,	PUNCT
ihlr-22948	379	4	receipt	receipt	NOUN
ihlr-22948	379	5	of	of	ADP
ihlr-22948	379	6	treatment	treatment	NOUN
ihlr-22948	379	7	in	in	ADP
ihlr-22948	379	8	a	a	DET
ihlr-22948	379	9	clinical	clinical	ADJ
ihlr-22948	379	10	trial	trial	NOUN
ihlr-22948	379	11	may	may	AUX
ihlr-22948	379	12	be	be	AUX
ihlr-22948	379	13	conditioned	condition	VERB
ihlr-22948	379	14	on	on	ADP
ihlr-22948	379	15	allowing	allow	VERB
ihlr-22948	379	16	data	datum	NOUN
ihlr-22948	379	17	to	to	PART
ihlr-22948	379	18	be	be	AUX
ihlr-22948	379	19	shared	share	VERB
ihlr-22948	379	20	with	with	ADP
ihlr-22948	379	21	the	the	DET
ihlr-22948	379	22	trial	trial	NOUN
ihlr-22948	379	23	.	.	PUNCT
ihlr-22948	380	1	however	however	ADV
ihlr-22948	380	2	,	,	PUNCT
ihlr-22948	380	3	treatment	treatment	NOUN
ihlr-22948	380	4	may	may	AUX
ihlr-22948	380	5	not	not	PART
ihlr-22948	380	6	be	be	AUX
ihlr-22948	380	7	conditioned	condition	VERB
ihlr-22948	380	8	on	on	ADP
ihlr-22948	380	9	participation	participation	NOUN
ihlr-22948	380	10	in	in	ADP
ihlr-22948	380	11	a	a	DET
ihlr-22948	380	12	registry	registry	NOUN
ihlr-22948	380	13	unless	unless	SCONJ
ihlr-22948	380	14	the	the	DET
ihlr-22948	380	15	registry	registry	NOUN
ihlr-22948	380	16	is	be	AUX
ihlr-22948	380	17	part	part	NOUN
ihlr-22948	380	18	of	of	ADP
ihlr-22948	380	19	the	the	DET
ihlr-22948	380	20	trial	trial	NOUN
ihlr-22948	380	21	.	.	PUNCT
ihlr-22948	381	1	i	i	PRON
ihlr-22948	381	2	d.	d.	PROPN
ihlr-22948	381	3	81	81	NUM
ihlr-22948	381	4	.	.	PUNCT
ihlr-22948	382	1	45	45	NUM
ihlr-22948	382	2	c.f.r	c.f.r	NOUN
ihlr-22948	382	3	.	.	PUNCT
ihlr-22948	383	1	§	§	PROPN
ihlr-22948	383	2	164.512(b)(1)(i	164.512(b)(1)(i	NUM
ihlr-22948	383	3	)	)	PUNCT
ihlr-22948	383	4	(	(	PUNCT
ihlr-22948	383	5	2018	2018	NUM
ihlr-22948	383	6	)	)	PUNCT
ihlr-22948	383	7	.	.	PUNCT
ihlr-22948	384	1	see	see	VERB
ihlr-22948	384	2	office	office	NOUN
ihlr-22948	384	3	of	of	ADP
ihlr-22948	384	4	the	the	DET
ihlr-22948	384	5	nat’l	nat’l	NOUN
ihlr-22948	384	6	coordinator	coordinator	NOUN
ihlr-22948	384	7	for	for	ADP
ihlr-22948	384	8	health	health	NOUN
ihlr-22948	384	9	info	info	NOUN
ihlr-22948	384	10	.	.	PUNCT
ihlr-22948	385	1	tech	tech	NOUN
ihlr-22948	385	2	.	.	PUNCT
ihlr-22948	385	3	permitted	permit	VERB
ihlr-22948	385	4	uses	use	NOUN
ihlr-22948	385	5	and	and	CCONJ
ihlr-22948	385	6	disclosures	disclosure	NOUN
ihlr-22948	385	7	:	:	PUNCT
ihlr-22948	385	8	exchange	exchange	NOUN
ihlr-22948	385	9	for	for	ADP
ihlr-22948	385	10	public	public	ADJ
ihlr-22948	385	11	health	health	NOUN
ihlr-22948	385	12	activities	activity	NOUN
ihlr-22948	385	13	(	(	PUNCT
ihlr-22948	385	14	2016	2016	NUM
ihlr-22948	385	15	)	)	PUNCT
ihlr-22948	385	16	,	,	PUNCT
ihlr-22948	385	17	https://www.healthit.gov/sites/default/files/12072016_hipaa_and_public	https://www.healthit.gov/sites/default/files/12072016_hipaa_and_public	X
ihlr-22948	385	18	_	_	PUNCT
ihlr-22948	385	19	health_fact_sheet.pdf	health_fact_sheet.pdf	PUNCT
ihlr-22948	386	1	[	[	X
ihlr-22948	386	2	https://perma.cc/62ew-gsq3	https://perma.cc/62ew-gsq3	X
ihlr-22948	386	3	]	]	X
ihlr-22948	386	4	.	.	PUNCT
ihlr-22948	387	1	82	82	NUM
ihlr-22948	387	2	.	.	NOUN
ihlr-22948	388	1	45	45	NUM
ihlr-22948	388	2	c.f.r	c.f.r	NOUN
ihlr-22948	388	3	.	.	PUNCT
ihlr-22948	389	1	§	§	PROPN
ihlr-22948	389	2	164.502(a)(1)(ii	164.502(a)(1)(ii	NUM
ihlr-22948	389	3	)	)	PUNCT
ihlr-22948	389	4	(	(	PUNCT
ihlr-22948	389	5	2018	2018	NUM
ihlr-22948	389	6	)	)	PUNCT
ihlr-22948	389	7	.	.	PUNCT
ihlr-22948	390	1	58	58	NUM
ihlr-22948	390	2	indiana	indiana	PROPN
ihlr-22948	390	3	health	health	PROPN
ihlr-22948	390	4	law	law	PROPN
ihlr-22948	390	5	review	review	NOUN
ihlr-22948	390	6	[	[	X
ihlr-22948	390	7	vol	vol	NOUN
ihlr-22948	390	8	.	.	PUNCT
ihlr-22948	391	1	16:43	16:43	NUM
ihlr-22948	391	2	protected	protect	VERB
ihlr-22948	391	3	by	by	ADP
ihlr-22948	391	4	hipaa;83	hipaa;83	X
ihlr-22948	391	5	thus	thus	ADV
ihlr-22948	391	6	,	,	PUNCT
ihlr-22948	391	7	information	information	NOUN
ihlr-22948	391	8	that	that	PRON
ihlr-22948	391	9	has	have	AUX
ihlr-22948	391	10	been	be	AUX
ihlr-22948	391	11	de	de	VERB
ihlr-22948	391	12	-	-	VERB
ihlr-22948	391	13	identified	identify	VERB
ihlr-22948	391	14	before	before	ADP
ihlr-22948	391	15	being	be	AUX
ihlr-22948	391	16	transferred	transfer	VERB
ihlr-22948	391	17	to	to	ADP
ihlr-22948	391	18	registries	registry	NOUN
ihlr-22948	391	19	is	be	AUX
ihlr-22948	391	20	no	no	ADV
ihlr-22948	391	21	longer	long	ADV
ihlr-22948	391	22	considered	consider	VERB
ihlr-22948	391	23	to	to	PART
ihlr-22948	391	24	be	be	AUX
ihlr-22948	391	25	under	under	ADP
ihlr-22948	391	26	the	the	DET
ihlr-22948	391	27	strictures	stricture	NOUN
ihlr-22948	391	28	of	of	ADP
ihlr-22948	391	29	hipaa	hipaa	PROPN
ihlr-22948	391	30	.	.	PUNCT
ihlr-22948	392	1	information	information	NOUN
ihlr-22948	392	2	may	may	AUX
ihlr-22948	392	3	also	also	ADV
ihlr-22948	392	4	be	be	AUX
ihlr-22948	392	5	transferred	transfer	VERB
ihlr-22948	392	6	and	and	CCONJ
ihlr-22948	392	7	used	use	VERB
ihlr-22948	392	8	without	without	ADP
ihlr-22948	392	9	authorization	authorization	NOUN
ihlr-22948	392	10	if	if	SCONJ
ihlr-22948	392	11	it	it	PRON
ihlr-22948	392	12	has	have	AUX
ihlr-22948	392	13	been	be	AUX
ihlr-22948	392	14	partially	partially	ADV
ihlr-22948	392	15	de	de	VERB
ihlr-22948	392	16	-	-	VERB
ihlr-22948	392	17	identified	identify	VERB
ihlr-22948	392	18	in	in	ADP
ihlr-22948	392	19	the	the	DET
ihlr-22948	392	20	form	form	NOUN
ihlr-22948	392	21	of	of	ADP
ihlr-22948	392	22	what	what	PRON
ihlr-22948	392	23	hipaa	hipaa	NOUN
ihlr-22948	392	24	terms	term	VERB
ihlr-22948	392	25	a	a	DET
ihlr-22948	392	26	“	"	PUNCT
ihlr-22948	392	27	limited	limited	ADJ
ihlr-22948	392	28	data	datum	NOUN
ihlr-22948	392	29	set	set	NOUN
ihlr-22948	392	30	.	.	PUNCT
ihlr-22948	393	1	”84	”84	NOUN
ihlr-22948	393	2	use	use	NOUN
ihlr-22948	393	3	of	of	ADP
ihlr-22948	393	4	limited	limited	ADJ
ihlr-22948	393	5	data	data	NOUN
ihlr-22948	393	6	sets	set	NOUN
ihlr-22948	393	7	requires	require	VERB
ihlr-22948	393	8	a	a	DET
ihlr-22948	393	9	data	data	NOUN
ihlr-22948	393	10	use	use	NOUN
ihlr-22948	393	11	agreement	agreement	NOUN
ihlr-22948	393	12	to	to	PART
ihlr-22948	393	13	protect	protect	VERB
ihlr-22948	393	14	from	from	ADP
ihlr-22948	393	15	reidentification	reidentification	NOUN
ihlr-22948	393	16	.	.	PUNCT
ihlr-22948	394	1	hipaa	hipaa	NOUN
ihlr-22948	394	2	thus	thus	ADV
ihlr-22948	394	3	provides	provide	VERB
ihlr-22948	394	4	some	some	DET
ihlr-22948	394	5	fairly	fairly	ADV
ihlr-22948	394	6	extensive	extensive	ADJ
ihlr-22948	394	7	protections	protection	NOUN
ihlr-22948	394	8	for	for	ADP
ihlr-22948	394	9	the	the	DET
ihlr-22948	394	10	health	health	NOUN
ihlr-22948	394	11	information	information	NOUN
ihlr-22948	394	12	it	it	PRON
ihlr-22948	394	13	covers	cover	VERB
ihlr-22948	394	14	.	.	PUNCT
ihlr-22948	395	1	to	to	PART
ihlr-22948	395	2	be	be	AUX
ihlr-22948	395	3	sure	sure	ADJ
ihlr-22948	395	4	,	,	PUNCT
ihlr-22948	395	5	some	some	PRON
ihlr-22948	395	6	of	of	ADP
ihlr-22948	395	7	the	the	DET
ihlr-22948	395	8	exceptions	exception	NOUN
ihlr-22948	395	9	to	to	ADP
ihlr-22948	395	10	authorization	authorization	NOUN
ihlr-22948	395	11	,	,	PUNCT
ihlr-22948	395	12	such	such	ADJ
ihlr-22948	395	13	as	as	ADP
ihlr-22948	395	14	the	the	DET
ihlr-22948	395	15	exception	exception	NOUN
ihlr-22948	395	16	for	for	ADP
ihlr-22948	395	17	public	public	ADJ
ihlr-22948	395	18	health	health	NOUN
ihlr-22948	395	19	,	,	PUNCT
ihlr-22948	395	20	have	have	AUX
ihlr-22948	395	21	come	come	VERB
ihlr-22948	395	22	under	under	ADP
ihlr-22948	395	23	significant	significant	ADJ
ihlr-22948	395	24	criticism	criticism	NOUN
ihlr-22948	395	25	from	from	ADP
ihlr-22948	395	26	privacy	privacy	NOUN
ihlr-22948	395	27	advocates	advocate	NOUN
ihlr-22948	395	28	.	.	PUNCT
ihlr-22948	396	1	however	however	ADV
ihlr-22948	396	2	,	,	PUNCT
ihlr-22948	396	3	the	the	DET
ihlr-22948	396	4	far	far	ADV
ihlr-22948	396	5	greater	great	ADJ
ihlr-22948	396	6	concern	concern	NOUN
ihlr-22948	396	7	is	be	AUX
ihlr-22948	396	8	the	the	DET
ihlr-22948	396	9	amount	amount	NOUN
ihlr-22948	396	10	of	of	ADP
ihlr-22948	396	11	health	health	NOUN
ihlr-22948	396	12	information	information	NOUN
ihlr-22948	396	13	that	that	PRON
ihlr-22948	396	14	is	be	AUX
ihlr-22948	396	15	outside	outside	ADP
ihlr-22948	396	16	of	of	ADP
ihlr-22948	396	17	the	the	DET
ihlr-22948	396	18	domain	domain	NOUN
ihlr-22948	396	19	of	of	ADP
ihlr-22948	396	20	hipaa	hipaa	PROPN
ihlr-22948	396	21	.	.	PUNCT
ihlr-22948	397	1	information	information	NOUN
ihlr-22948	397	2	in	in	ADP
ihlr-22948	397	3	registries	registry	NOUN
ihlr-22948	397	4	may	may	AUX
ihlr-22948	397	5	never	never	ADV
ihlr-22948	397	6	have	have	AUX
ihlr-22948	397	7	been	be	AUX
ihlr-22948	397	8	hipaa	hipaa	NOUN
ihlr-22948	397	9	-	-	PUNCT
ihlr-22948	397	10	protected	protect	VERB
ihlr-22948	397	11	because	because	SCONJ
ihlr-22948	397	12	it	it	PRON
ihlr-22948	397	13	was	be	AUX
ihlr-22948	397	14	submitted	submit	VERB
ihlr-22948	397	15	by	by	ADP
ihlr-22948	397	16	patients	patient	NOUN
ihlr-22948	397	17	themselves	themselves	PRON
ihlr-22948	397	18	or	or	CCONJ
ihlr-22948	397	19	other	other	ADJ
ihlr-22948	397	20	entities	entity	NOUN
ihlr-22948	397	21	that	that	PRON
ihlr-22948	397	22	are	be	AUX
ihlr-22948	397	23	not	not	PART
ihlr-22948	397	24	within	within	ADP
ihlr-22948	397	25	the	the	DET
ihlr-22948	397	26	hipaa	hipaa	NOUN
ihlr-22948	397	27	definition	definition	NOUN
ihlr-22948	397	28	of	of	ADP
ihlr-22948	397	29	a	a	DET
ihlr-22948	397	30	covered	cover	VERB
ihlr-22948	397	31	entity	entity	NOUN
ihlr-22948	397	32	or	or	CCONJ
ihlr-22948	397	33	business	business	NOUN
ihlr-22948	397	34	associate	associate	NOUN
ihlr-22948	397	35	.	.	PUNCT
ihlr-22948	398	1	information	information	NOUN
ihlr-22948	398	2	that	that	PRON
ihlr-22948	398	3	was	be	AUX
ihlr-22948	398	4	once	once	ADV
ihlr-22948	398	5	hipaa	hipaa	NOUN
ihlr-22948	398	6	-	-	PUNCT
ihlr-22948	398	7	protected	protect	VERB
ihlr-22948	398	8	may	may	AUX
ihlr-22948	398	9	also	also	ADV
ihlr-22948	398	10	lose	lose	VERB
ihlr-22948	398	11	that	that	DET
ihlr-22948	398	12	protection	protection	NOUN
ihlr-22948	398	13	if	if	SCONJ
ihlr-22948	398	14	it	it	PRON
ihlr-22948	398	15	is	be	AUX
ihlr-22948	398	16	transferred	transfer	VERB
ihlr-22948	398	17	to	to	ADP
ihlr-22948	398	18	a	a	DET
ihlr-22948	398	19	registry	registry	NOUN
ihlr-22948	398	20	that	that	PRON
ihlr-22948	398	21	is	be	AUX
ihlr-22948	398	22	not	not	PART
ihlr-22948	398	23	within	within	ADP
ihlr-22948	398	24	the	the	DET
ihlr-22948	398	25	hipaa	hipaa	NOUN
ihlr-22948	398	26	orbit	orbit	NOUN
ihlr-22948	398	27	.	.	PUNCT
ihlr-22948	399	1	iv	iv	X
ihlr-22948	399	2	.	.	PUNCT
ihlr-22948	399	3	fair	fair	ADJ
ihlr-22948	399	4	information	information	NOUN
ihlr-22948	399	5	practices	practice	NOUN
ihlr-22948	399	6	and	and	CCONJ
ihlr-22948	399	7	data	datum	NOUN
ihlr-22948	399	8	stewardship	stewardship	NOUN
ihlr-22948	399	9	fair	fair	ADJ
ihlr-22948	399	10	information	information	NOUN
ihlr-22948	399	11	practices	practice	NOUN
ihlr-22948	399	12	(	(	PUNCT
ihlr-22948	399	13	“	"	PUNCT
ihlr-22948	399	14	fips	fip	NOUN
ihlr-22948	399	15	”	"	PUNCT
ihlr-22948	399	16	)	)	PUNCT
ihlr-22948	399	17	were	be	AUX
ihlr-22948	399	18	initially	initially	ADV
ihlr-22948	399	19	proposed	propose	VERB
ihlr-22948	399	20	over	over	ADP
ihlr-22948	399	21	forty	forty	NUM
ihlr-22948	399	22	years	year	NOUN
ihlr-22948	399	23	ago	ago	ADV
ihlr-22948	399	24	with	with	ADP
ihlr-22948	399	25	the	the	DET
ihlr-22948	399	26	advent	advent	NOUN
ihlr-22948	399	27	of	of	ADP
ihlr-22948	399	28	electronic	electronic	ADJ
ihlr-22948	399	29	data	datum	NOUN
ihlr-22948	399	30	and	and	CCONJ
ihlr-22948	399	31	have	have	AUX
ihlr-22948	399	32	been	be	AUX
ihlr-22948	399	33	honed	hone	VERB
ihlr-22948	399	34	over	over	ADP
ihlr-22948	399	35	the	the	DET
ihlr-22948	399	36	ensuing	ensue	VERB
ihlr-22948	399	37	years.85	years.85	NOUN
ihlr-22948	399	38	this	this	DET
ihlr-22948	399	39	summary	summary	NOUN
ihlr-22948	399	40	of	of	ADP
ihlr-22948	399	41	fips	fip	NOUN
ihlr-22948	399	42	is	be	AUX
ihlr-22948	399	43	distilled	distil	VERB
ihlr-22948	399	44	from	from	ADP
ihlr-22948	399	45	the	the	DET
ihlr-22948	399	46	initial	initial	ADJ
ihlr-22948	399	47	report	report	NOUN
ihlr-22948	399	48	of	of	ADP
ihlr-22948	399	49	the	the	DET
ihlr-22948	399	50	thendepartment	thendepartment	NOUN
ihlr-22948	399	51	of	of	ADP
ihlr-22948	399	52	health	health	NOUN
ihlr-22948	399	53	,	,	PUNCT
ihlr-22948	399	54	education	education	NOUN
ihlr-22948	399	55	,	,	PUNCT
ihlr-22948	399	56	and	and	CCONJ
ihlr-22948	399	57	welfare	welfare	NOUN
ihlr-22948	399	58	(	(	PUNCT
ihlr-22948	399	59	“	"	PUNCT
ihlr-22948	399	60	dhew	dhew	NOUN
ihlr-22948	399	61	”	"	PUNCT
ihlr-22948	399	62	)	)	PUNCT
ihlr-22948	399	63	,	,	PUNCT
ihlr-22948	399	64	the	the	DET
ihlr-22948	399	65	organization	organization	NOUN
ihlr-22948	399	66	for	for	ADP
ihlr-22948	399	67	economic	economic	ADJ
ihlr-22948	399	68	co	co	NOUN
ihlr-22948	399	69	-	-	NOUN
ihlr-22948	399	70	operation	operation	NOUN
ihlr-22948	399	71	and	and	CCONJ
ihlr-22948	399	72	development	development	NOUN
ihlr-22948	399	73	(	(	PUNCT
ihlr-22948	399	74	“	"	PUNCT
ihlr-22948	399	75	oecd	oecd	PROPN
ihlr-22948	399	76	”	"	PUNCT
ihlr-22948	399	77	)	)	PUNCT
ihlr-22948	399	78	guidelines	guideline	NOUN
ihlr-22948	399	79	for	for	ADP
ihlr-22948	399	80	privacy	privacy	NOUN
ihlr-22948	399	81	protection	protection	NOUN
ihlr-22948	399	82	,	,	PUNCT
ihlr-22948	399	83	and	and	CCONJ
ihlr-22948	399	84	recommendations	recommendation	NOUN
ihlr-22948	399	85	of	of	ADP
ihlr-22948	399	86	the	the	DET
ihlr-22948	399	87	u.s	u.s	PROPN
ihlr-22948	399	88	.	.	PROPN
ihlr-22948	399	89	office	office	NOUN
ihlr-22948	399	90	of	of	ADP
ihlr-22948	399	91	the	the	DET
ihlr-22948	399	92	national	national	ADJ
ihlr-22948	399	93	coordinator	coordinator	NOUN
ihlr-22948	399	94	for	for	ADP
ihlr-22948	399	95	health	health	NOUN
ihlr-22948	399	96	information	information	NOUN
ihlr-22948	399	97	technology	technology	NOUN
ihlr-22948	399	98	(	(	PUNCT
ihlr-22948	399	99	“	"	PUNCT
ihlr-22948	399	100	onc	onc	PROPN
ihlr-22948	399	101	”	"	PUNCT
ihlr-22948	399	102	)	)	PUNCT
ihlr-22948	399	103	and	and	CCONJ
ihlr-22948	399	104	the	the	DET
ihlr-22948	399	105	national	national	PROPN
ihlr-22948	399	106	committee	committee	PROPN
ihlr-22948	399	107	on	on	ADP
ihlr-22948	399	108	vital	vital	ADJ
ihlr-22948	399	109	and	and	CCONJ
ihlr-22948	399	110	health	health	NOUN
ihlr-22948	399	111	statistics	statistic	NOUN
ihlr-22948	399	112	(	(	PUNCT
ihlr-22948	399	113	“	"	PUNCT
ihlr-22948	399	114	ncvhs	ncvhs	PROPN
ihlr-22948	399	115	”	"	PUNCT
ihlr-22948	399	116	)	)	PUNCT
ihlr-22948	399	117	.	.	PUNCT
ihlr-22948	400	1	fips	fips	PROPN
ihlr-22948	400	2	were	be	AUX
ihlr-22948	400	3	initially	initially	ADV
ihlr-22948	400	4	proposed	propose	VERB
ihlr-22948	400	5	in	in	ADP
ihlr-22948	400	6	a	a	DET
ihlr-22948	400	7	report	report	NOUN
ihlr-22948	400	8	from	from	ADP
ihlr-22948	400	9	dhew	dhew	NOUN
ihlr-22948	400	10	in	in	ADP
ihlr-22948	400	11	1973	1973	NUM
ihlr-22948	400	12	:	:	PUNCT
ihlr-22948	400	13	“	"	PUNCT
ihlr-22948	400	14	records	record	NOUN
ihlr-22948	400	15	,	,	PUNCT
ihlr-22948	400	16	computers	computer	NOUN
ihlr-22948	400	17	,	,	PUNCT
ihlr-22948	400	18	and	and	CCONJ
ihlr-22948	400	19	the	the	DET
ihlr-22948	400	20	rights	right	NOUN
ihlr-22948	400	21	of	of	ADP
ihlr-22948	400	22	citizens	citizen	NOUN
ihlr-22948	400	23	.	.	PUNCT
ihlr-22948	401	1	”86	”86	VERB
ihlr-22948	401	2	the	the	DET
ihlr-22948	401	3	report	report	NOUN
ihlr-22948	401	4	,	,	PUNCT
ihlr-22948	401	5	spawned	spawn	VERB
ihlr-22948	401	6	by	by	ADP
ihlr-22948	401	7	the	the	DET
ihlr-22948	401	8	growing	grow	VERB
ihlr-22948	401	9	recognition	recognition	NOUN
ihlr-22948	401	10	of	of	ADP
ihlr-22948	401	11	the	the	DET
ihlr-22948	401	12	power	power	NOUN
ihlr-22948	401	13	of	of	ADP
ihlr-22948	401	14	electronic	electronic	ADJ
ihlr-22948	401	15	data	datum	NOUN
ihlr-22948	401	16	,	,	PUNCT
ihlr-22948	401	17	rested	rest	VERB
ihlr-22948	401	18	on	on	ADP
ihlr-22948	401	19	five	five	NUM
ihlr-22948	401	20	key	key	ADJ
ihlr-22948	401	21	principles	principle	NOUN
ihlr-22948	401	22	:	:	PUNCT
ihlr-22948	401	23	(	(	PUNCT
ihlr-22948	401	24	1	1	X
ihlr-22948	401	25	)	)	PUNCT
ihlr-22948	401	26	there	there	PRON
ihlr-22948	401	27	must	must	AUX
ihlr-22948	401	28	be	be	AUX
ihlr-22948	401	29	no	no	DET
ihlr-22948	401	30	record	record	NOUN
ihlr-22948	401	31	-	-	PUNCT
ihlr-22948	401	32	keeping	keep	VERB
ihlr-22948	401	33	systems	system	NOUN
ihlr-22948	401	34	whose	whose	DET
ihlr-22948	401	35	very	very	ADJ
ihlr-22948	401	36	existence	existence	NOUN
ihlr-22948	401	37	is	be	AUX
ihlr-22948	401	38	private	private	ADJ
ihlr-22948	401	39	;	;	PUNCT
ihlr-22948	401	40	(	(	PUNCT
ihlr-22948	401	41	2	2	X
ihlr-22948	401	42	)	)	PUNCT
ihlr-22948	401	43	there	there	PRON
ihlr-22948	401	44	must	must	AUX
ihlr-22948	401	45	be	be	AUX
ihlr-22948	401	46	a	a	DET
ihlr-22948	401	47	way	way	NOUN
ihlr-22948	401	48	for	for	SCONJ
ihlr-22948	401	49	an	an	DET
ihlr-22948	401	50	individual	individual	NOUN
ihlr-22948	401	51	to	to	PART
ihlr-22948	401	52	find	find	VERB
ihlr-22948	401	53	out	out	ADP
ihlr-22948	401	54	information	information	NOUN
ihlr-22948	401	55	about	about	ADP
ihlr-22948	401	56	his	his	PRON
ihlr-22948	401	57	own	own	ADJ
ihlr-22948	401	58	record	record	NOUN
ihlr-22948	401	59	and	and	CCONJ
ihlr-22948	401	60	how	how	SCONJ
ihlr-22948	401	61	it	it	PRON
ihlr-22948	401	62	is	be	AUX
ihlr-22948	401	63	being	be	AUX
ihlr-22948	401	64	used	use	VERB
ihlr-22948	401	65	;	;	PUNCT
ihlr-22948	401	66	(	(	PUNCT
ihlr-22948	401	67	3	3	X
ihlr-22948	401	68	)	)	PUNCT
ihlr-22948	401	69	there	there	PRON
ihlr-22948	401	70	must	must	AUX
ihlr-22948	401	71	be	be	AUX
ihlr-22948	401	72	a	a	DET
ihlr-22948	401	73	way	way	NOUN
ihlr-22948	401	74	for	for	SCONJ
ihlr-22948	401	75	the	the	DET
ihlr-22948	401	76	individual	individual	NOUN
ihlr-22948	401	77	to	to	PART
ihlr-22948	401	78	prevent	prevent	VERB
ihlr-22948	401	79	information	information	NOUN
ihlr-22948	401	80	about	about	ADP
ihlr-22948	401	81	him	he	PRON
ihlr-22948	401	82	that	that	PRON
ihlr-22948	401	83	was	be	AUX
ihlr-22948	401	84	obtained	obtain	VERB
ihlr-22948	401	85	for	for	ADP
ihlr-22948	401	86	one	one	NUM
ihlr-22948	401	87	purpose	purpose	NOUN
ihlr-22948	401	88	from	from	ADP
ihlr-22948	401	89	being	be	AUX
ihlr-22948	401	90	used	use	VERB
ihlr-22948	401	91	or	or	CCONJ
ihlr-22948	401	92	made	make	VERB
ihlr-22948	401	93	available	available	ADJ
ihlr-22948	401	94	for	for	ADP
ihlr-22948	401	95	other	other	ADJ
ihlr-22948	401	96	purposes	purpose	NOUN
ihlr-22948	401	97	83	83	NUM
ihlr-22948	401	98	.	.	PUNCT
ihlr-22948	402	1	45	45	NUM
ihlr-22948	402	2	c.f.r	c.f.r	NOUN
ihlr-22948	402	3	.	.	PUNCT
ihlr-22948	403	1	§	§	PROPN
ihlr-22948	403	2	164.514(a	164.514(a	NUM
ihlr-22948	403	3	)	)	PUNCT
ihlr-22948	403	4	(	(	PUNCT
ihlr-22948	403	5	2018	2018	NUM
ihlr-22948	403	6	)	)	PUNCT
ihlr-22948	403	7	.	.	PUNCT
ihlr-22948	404	1	84	84	NUM
ihlr-22948	404	2	.	.	X
ihlr-22948	405	1	45	45	NUM
ihlr-22948	405	2	c.f.r	c.f.r	NOUN
ihlr-22948	405	3	.	.	PUNCT
ihlr-22948	406	1	§	§	PROPN
ihlr-22948	406	2	164.514(e	164.514(e	PROPN
ihlr-22948	406	3	)	)	PUNCT
ihlr-22948	406	4	(	(	PUNCT
ihlr-22948	406	5	2018	2018	NUM
ihlr-22948	406	6	)	)	PUNCT
ihlr-22948	406	7	.	.	PUNCT
ihlr-22948	407	1	limited	limited	ADJ
ihlr-22948	407	2	data	data	NOUN
ihlr-22948	407	3	sets	set	NOUN
ihlr-22948	407	4	may	may	AUX
ihlr-22948	407	5	contain	contain	VERB
ihlr-22948	407	6	more	more	ADV
ihlr-22948	407	7	specific	specific	ADJ
ihlr-22948	407	8	location	location	NOUN
ihlr-22948	407	9	information	information	NOUN
ihlr-22948	407	10	and	and	CCONJ
ihlr-22948	407	11	dates	date	NOUN
ihlr-22948	407	12	of	of	ADP
ihlr-22948	407	13	treatment	treatment	NOUN
ihlr-22948	407	14	than	than	ADP
ihlr-22948	407	15	de	de	ADJ
ihlr-22948	407	16	-	-	ADJ
ihlr-22948	407	17	identified	identify	VERB
ihlr-22948	407	18	information	information	NOUN
ihlr-22948	407	19	.	.	PUNCT
ihlr-22948	408	1	i	i	PRON
ihlr-22948	408	2	d.	d.	PROPN
ihlr-22948	408	3	85	85	NUM
ihlr-22948	408	4	.	.	PUNCT
ihlr-22948	409	1	robert	robert	PROPN
ihlr-22948	409	2	gellman	gellman	PROPN
ihlr-22948	409	3	,	,	PUNCT
ihlr-22948	409	4	fair	fair	ADJ
ihlr-22948	409	5	information	information	NOUN
ihlr-22948	409	6	practices	practice	NOUN
ihlr-22948	409	7	:	:	PUNCT
ihlr-22948	409	8	a	a	DET
ihlr-22948	409	9	basic	basic	ADJ
ihlr-22948	409	10	history	history	NOUN
ihlr-22948	409	11	(	(	PUNCT
ihlr-22948	409	12	2017	2017	NUM
ihlr-22948	409	13	)	)	PUNCT
ihlr-22948	409	14	,	,	PUNCT
ihlr-22948	409	15	https://bobgellman.com/rg-docs/rg-fipshistory.pdf	https://bobgellman.com/rg-docs/rg-fipshistory.pdf	PROPN
ihlr-22948	410	1	[	[	X
ihlr-22948	410	2	https://perma.cc/j4mw-n6	https://perma.cc/j4mw-n6	X
ihlr-22948	410	3	kg	kg	X
ihlr-22948	410	4	]	]	X
ihlr-22948	410	5	.	.	PUNCT
ihlr-22948	411	1	86	86	NUM
ihlr-22948	411	2	.	.	PUNCT
ihlr-22948	412	1	willis	willis	PROPN
ihlr-22948	412	2	h.	h.	PROPN
ihlr-22948	412	3	ware	ware	VERB
ihlr-22948	412	4	et	et	PROPN
ihlr-22948	412	5	al	al	PROPN
ihlr-22948	412	6	.	.	PROPN
ihlr-22948	412	7	,	,	PUNCT
ihlr-22948	412	8	records	record	NOUN
ihlr-22948	412	9	,	,	PUNCT
ihlr-22948	412	10	computers	computer	NOUN
ihlr-22948	412	11	and	and	CCONJ
ihlr-22948	412	12	the	the	DET
ihlr-22948	412	13	rights	right	NOUN
ihlr-22948	412	14	of	of	ADP
ihlr-22948	412	15	citizens	citizen	NOUN
ihlr-22948	412	16	,	,	PUNCT
ihlr-22948	412	17	xx	xx	PROPN
ihlr-22948	412	18	-	-	SYM
ihlr-22948	412	19	xi	xi	X
ihlr-22948	412	20	(	(	PUNCT
ihlr-22948	412	21	1973	1973	NUM
ihlr-22948	412	22	)	)	PUNCT
ihlr-22948	412	23	,	,	PUNCT
ihlr-22948	413	1	https://www.justice.gov/opcl/docs/rec-com-rights.pdf	https://www.justice.gov/opcl/docs/rec-com-rights.pdf	PROPN
ihlr-22948	414	1	[	[	X
ihlr-22948	414	2	https://perma.cc/29ku-s648	https://perma.cc/29ku-s648	X
ihlr-22948	414	3	]	]	X
ihlr-22948	414	4	;	;	PUNCT
ihlr-22948	414	5	see	see	VERB
ihlr-22948	414	6	also	also	ADV
ihlr-22948	414	7	s.	s.	PROPN
ihlr-22948	414	8	rep	rep	PROPN
ihlr-22948	414	9	.	.	PROPN
ihlr-22948	414	10	no	no	PROPN
ihlr-22948	414	11	.	.	PROPN
ihlr-22948	414	12	93	93	NUM
ihlr-22948	414	13	-	-	SYM
ihlr-22948	414	14	1183	1183	NUM
ihlr-22948	414	15	,	,	PUNCT
ihlr-22948	414	16	at	at	ADP
ihlr-22948	414	17	8	8	NUM
ihlr-22948	414	18	-	-	SYM
ihlr-22948	414	19	10	10	NUM
ihlr-22948	414	20	(	(	PUNCT
ihlr-22948	414	21	1974	1974	NUM
ihlr-22948	414	22	)	)	PUNCT
ihlr-22948	414	23	.	.	PUNCT
ihlr-22948	415	1	2018	2018	NUM
ihlr-22948	415	2	]	]	PUNCT
ihlr-22948	415	3	patient	patient	ADJ
ihlr-22948	415	4	registries	registry	NOUN
ihlr-22948	415	5	and	and	CCONJ
ihlr-22948	415	6	their	their	PRON
ihlr-22948	415	7	governance	governance	NOUN
ihlr-22948	415	8	59	59	NUM
ihlr-22948	415	9	without	without	ADP
ihlr-22948	415	10	his	his	PRON
ihlr-22948	415	11	consent	consent	NOUN
ihlr-22948	415	12	;	;	PUNCT
ihlr-22948	415	13	(	(	PUNCT
ihlr-22948	415	14	4	4	X
ihlr-22948	415	15	)	)	PUNCT
ihlr-22948	415	16	there	there	PRON
ihlr-22948	415	17	must	must	AUX
ihlr-22948	415	18	be	be	AUX
ihlr-22948	415	19	a	a	DET
ihlr-22948	415	20	way	way	NOUN
ihlr-22948	415	21	for	for	SCONJ
ihlr-22948	415	22	an	an	DET
ihlr-22948	415	23	individual	individual	NOUN
ihlr-22948	415	24	to	to	PART
ihlr-22948	415	25	correct	correct	VERB
ihlr-22948	415	26	or	or	CCONJ
ihlr-22948	415	27	amend	amend	VERB
ihlr-22948	415	28	a	a	DET
ihlr-22948	415	29	record	record	NOUN
ihlr-22948	415	30	of	of	ADP
ihlr-22948	415	31	identifiable	identifiable	ADJ
ihlr-22948	415	32	information	information	NOUN
ihlr-22948	415	33	about	about	ADP
ihlr-22948	415	34	him	he	PRON
ihlr-22948	415	35	;	;	PUNCT
ihlr-22948	415	36	and	and	CCONJ
ihlr-22948	415	37	(	(	PUNCT
ihlr-22948	415	38	5	5	X
ihlr-22948	415	39	)	)	PUNCT
ihlr-22948	415	40	any	any	DET
ihlr-22948	415	41	organization	organization	NOUN
ihlr-22948	415	42	creating	create	VERB
ihlr-22948	415	43	,	,	PUNCT
ihlr-22948	415	44	maintaining	maintain	VERB
ihlr-22948	415	45	,	,	PUNCT
ihlr-22948	415	46	using	use	VERB
ihlr-22948	415	47	or	or	CCONJ
ihlr-22948	415	48	disseminating	disseminate	VERB
ihlr-22948	415	49	records	record	NOUN
ihlr-22948	415	50	of	of	ADP
ihlr-22948	415	51	identifiable	identifiable	ADJ
ihlr-22948	415	52	personal	personal	ADJ
ihlr-22948	415	53	data	datum	NOUN
ihlr-22948	415	54	must	must	AUX
ihlr-22948	415	55	assure	assure	VERB
ihlr-22948	415	56	the	the	DET
ihlr-22948	415	57	reliability	reliability	NOUN
ihlr-22948	415	58	of	of	ADP
ihlr-22948	415	59	the	the	DET
ihlr-22948	415	60	data	datum	NOUN
ihlr-22948	415	61	for	for	ADP
ihlr-22948	415	62	their	their	PRON
ihlr-22948	415	63	intended	intend	VERB
ihlr-22948	415	64	use	use	NOUN
ihlr-22948	415	65	and	and	CCONJ
ihlr-22948	415	66	must	must	AUX
ihlr-22948	415	67	take	take	VERB
ihlr-22948	415	68	precautions	precaution	NOUN
ihlr-22948	415	69	to	to	PART
ihlr-22948	415	70	prevent	prevent	VERB
ihlr-22948	415	71	misuse	misuse	NOUN
ihlr-22948	415	72	of	of	ADP
ihlr-22948	415	73	the	the	DET
ihlr-22948	415	74	data.87	data.87	NOUN
ihlr-22948	415	75	in	in	ADP
ihlr-22948	415	76	1980	1980	NUM
ihlr-22948	415	77	,	,	PUNCT
ihlr-22948	415	78	the	the	DET
ihlr-22948	415	79	oecd	oecd	PROPN
ihlr-22948	415	80	proposed	propose	VERB
ihlr-22948	415	81	a	a	DET
ihlr-22948	415	82	similar	similar	ADJ
ihlr-22948	415	83	list	list	NOUN
ihlr-22948	415	84	of	of	ADP
ihlr-22948	415	85	recommendations	recommendation	NOUN
ihlr-22948	415	86	that	that	PRON
ihlr-22948	415	87	subdivided	subdivide	VERB
ihlr-22948	415	88	several	several	ADJ
ihlr-22948	415	89	of	of	ADP
ihlr-22948	415	90	the	the	DET
ihlr-22948	415	91	hew	hew	NOUN
ihlr-22948	415	92	recommendations	recommendation	NOUN
ihlr-22948	415	93	and	and	CCONJ
ihlr-22948	415	94	also	also	ADV
ihlr-22948	415	95	specified	specify	VERB
ihlr-22948	415	96	collection	collection	NOUN
ihlr-22948	415	97	limitation	limitation	NOUN
ihlr-22948	415	98	,	,	PUNCT
ihlr-22948	415	99	security	security	NOUN
ihlr-22948	415	100	protections	protection	NOUN
ihlr-22948	415	101	,	,	PUNCT
ihlr-22948	415	102	and	and	CCONJ
ihlr-22948	415	103	accountability.88	accountability.88	VERB
ihlr-22948	415	104	the	the	DET
ihlr-22948	415	105	oecd	oecd	PROPN
ihlr-22948	415	106	principles	principle	NOUN
ihlr-22948	415	107	included	include	VERB
ihlr-22948	415	108	:	:	PUNCT
ihlr-22948	415	109	(	(	PUNCT
ihlr-22948	415	110	1	1	X
ihlr-22948	415	111	)	)	PUNCT
ihlr-22948	415	112	collection	collection	NOUN
ihlr-22948	415	113	limitation	limitation	NOUN
ihlr-22948	415	114	;	;	PUNCT
ihlr-22948	415	115	(	(	PUNCT
ihlr-22948	415	116	2	2	X
ihlr-22948	415	117	)	)	PUNCT
ihlr-22948	415	118	data	datum	NOUN
ihlr-22948	415	119	quality	quality	NOUN
ihlr-22948	415	120	;	;	PUNCT
ihlr-22948	415	121	(	(	PUNCT
ihlr-22948	415	122	3	3	X
ihlr-22948	415	123	)	)	PUNCT
ihlr-22948	415	124	purpose	purpose	NOUN
ihlr-22948	415	125	specification	specification	NOUN
ihlr-22948	415	126	;	;	PUNCT
ihlr-22948	415	127	(	(	PUNCT
ihlr-22948	415	128	4	4	X
ihlr-22948	415	129	)	)	PUNCT
ihlr-22948	415	130	use	use	NOUN
ihlr-22948	415	131	limitation	limitation	NOUN
ihlr-22948	415	132	;	;	PUNCT
ihlr-22948	415	133	(	(	PUNCT
ihlr-22948	415	134	5	5	X
ihlr-22948	415	135	)	)	PUNCT
ihlr-22948	415	136	security	security	NOUN
ihlr-22948	415	137	safeguards	safeguard	NOUN
ihlr-22948	415	138	;	;	PUNCT
ihlr-22948	415	139	(	(	PUNCT
ihlr-22948	415	140	6	6	X
ihlr-22948	415	141	)	)	PUNCT
ihlr-22948	415	142	openness	openness	NOUN
ihlr-22948	415	143	;	;	PUNCT
ihlr-22948	415	144	(	(	PUNCT
ihlr-22948	415	145	7	7	X
ihlr-22948	415	146	)	)	PUNCT
ihlr-22948	415	147	individual	individual	ADJ
ihlr-22948	415	148	participation	participation	NOUN
ihlr-22948	415	149	;	;	PUNCT
ihlr-22948	415	150	and	and	CCONJ
ihlr-22948	415	151	(	(	PUNCT
ihlr-22948	415	152	8)	8)	NUM
ihlr-22948	415	153	accountability.89	accountability.89	NOUN
ihlr-22948	415	154	these	these	DET
ihlr-22948	415	155	initial	initial	ADJ
ihlr-22948	415	156	efforts	effort	NOUN
ihlr-22948	415	157	to	to	PART
ihlr-22948	415	158	delineate	delineate	VERB
ihlr-22948	415	159	fips	fip	NOUN
ihlr-22948	415	160	placed	place	VERB
ihlr-22948	415	161	robust	robust	ADJ
ihlr-22948	415	162	emphasis	emphasis	NOUN
ihlr-22948	415	163	on	on	ADP
ihlr-22948	415	164	transparency	transparency	NOUN
ihlr-22948	415	165	,	,	PUNCT
ihlr-22948	415	166	individual	individual	ADJ
ihlr-22948	415	167	involvement	involvement	NOUN
ihlr-22948	415	168	,	,	PUNCT
ihlr-22948	415	169	data	datum	NOUN
ihlr-22948	415	170	integrity	integrity	NOUN
ihlr-22948	415	171	,	,	PUNCT
ihlr-22948	415	172	and	and	CCONJ
ihlr-22948	415	173	protections	protection	NOUN
ihlr-22948	415	174	against	against	ADP
ihlr-22948	415	175	data	datum	NOUN
ihlr-22948	415	176	misuse	misuse	NOUN
ihlr-22948	415	177	.	.	PUNCT
ihlr-22948	416	1	as	as	SCONJ
ihlr-22948	416	2	health	health	NOUN
ihlr-22948	416	3	information	information	NOUN
ihlr-22948	416	4	has	have	AUX
ihlr-22948	416	5	become	become	AUX
ihlr-22948	416	6	managed	manage	VERB
ihlr-22948	416	7	in	in	ADP
ihlr-22948	416	8	electronic	electronic	ADJ
ihlr-22948	416	9	forms	form	NOUN
ihlr-22948	416	10	that	that	PRON
ihlr-22948	416	11	facilitate	facilitate	VERB
ihlr-22948	416	12	uses	use	VERB
ihlr-22948	416	13	beyond	beyond	ADP
ihlr-22948	416	14	the	the	DET
ihlr-22948	416	15	treatment	treatment	NOUN
ihlr-22948	416	16	of	of	ADP
ihlr-22948	416	17	individual	individual	ADJ
ihlr-22948	416	18	patients	patient	NOUN
ihlr-22948	416	19	,	,	PUNCT
ihlr-22948	416	20	the	the	DET
ihlr-22948	416	21	u.s	u.s	PROPN
ihlr-22948	416	22	.	.	PROPN
ihlr-22948	416	23	department	department	PROPN
ihlr-22948	416	24	of	of	ADP
ihlr-22948	416	25	health	health	PROPN
ihlr-22948	416	26	and	and	CCONJ
ihlr-22948	416	27	human	human	PROPN
ihlr-22948	416	28	services	service	NOUN
ihlr-22948	416	29	(	(	PUNCT
ihlr-22948	416	30	“	"	PUNCT
ihlr-22948	416	31	hhs	hhs	PROPN
ihlr-22948	416	32	”	"	PUNCT
ihlr-22948	416	33	)	)	PUNCT
ihlr-22948	416	34	has	have	AUX
ihlr-22948	416	35	both	both	CCONJ
ihlr-22948	416	36	encouraged	encourage	VERB
ihlr-22948	416	37	electronic	electronic	ADJ
ihlr-22948	416	38	medical	medical	ADJ
ihlr-22948	416	39	records	record	NOUN
ihlr-22948	416	40	and	and	CCONJ
ihlr-22948	416	41	developed	develop	VERB
ihlr-22948	416	42	a	a	DET
ihlr-22948	416	43	variety	variety	NOUN
ihlr-22948	416	44	of	of	ADP
ihlr-22948	416	45	materials	material	NOUN
ihlr-22948	416	46	for	for	ADP
ihlr-22948	416	47	promoting	promote	VERB
ihlr-22948	416	48	the	the	DET
ihlr-22948	416	49	privacy	privacy	NOUN
ihlr-22948	416	50	and	and	CCONJ
ihlr-22948	416	51	security	security	NOUN
ihlr-22948	416	52	of	of	ADP
ihlr-22948	416	53	the	the	DET
ihlr-22948	416	54	information	information	NOUN
ihlr-22948	416	55	these	these	DET
ihlr-22948	416	56	records	record	NOUN
ihlr-22948	416	57	contain	contain	VERB
ihlr-22948	416	58	.	.	PUNCT
ihlr-22948	417	1	the	the	DET
ihlr-22948	417	2	onc	onc	PROPN
ihlr-22948	417	3	within	within	ADP
ihlr-22948	417	4	hhs	hhs	PROPN
ihlr-22948	417	5	is	be	AUX
ihlr-22948	417	6	the	the	DET
ihlr-22948	417	7	primary	primary	ADJ
ihlr-22948	417	8	federal	federal	ADJ
ihlr-22948	417	9	entity	entity	NOUN
ihlr-22948	417	10	responsible	responsible	ADJ
ihlr-22948	417	11	for	for	ADP
ihlr-22948	417	12	health	health	NOUN
ihlr-22948	417	13	it	it	PRON
ihlr-22948	417	14	and	and	CCONJ
ihlr-22948	417	15	has	have	AUX
ihlr-22948	417	16	published	publish	VERB
ihlr-22948	417	17	a	a	DET
ihlr-22948	417	18	range	range	NOUN
ihlr-22948	417	19	of	of	ADP
ihlr-22948	417	20	“	"	PUNCT
ihlr-22948	417	21	how	how	SCONJ
ihlr-22948	417	22	to	to	PART
ihlr-22948	417	23	”	"	PUNCT
ihlr-22948	417	24	materials	material	NOUN
ihlr-22948	417	25	for	for	ADP
ihlr-22948	417	26	consumers	consumer	NOUN
ihlr-22948	417	27	and	and	CCONJ
ihlr-22948	417	28	providers	provider	NOUN
ihlr-22948	417	29	about	about	ADP
ihlr-22948	417	30	health	health	NOUN
ihlr-22948	417	31	information	information	NOUN
ihlr-22948	417	32	privacy	privacy	NOUN
ihlr-22948	417	33	and	and	CCONJ
ihlr-22948	417	34	security	security	NOUN
ihlr-22948	417	35	.	.	PUNCT
ihlr-22948	418	1	onc	onc	PROPN
ihlr-22948	418	2	has	have	AUX
ihlr-22948	418	3	also	also	ADV
ihlr-22948	418	4	attempted	attempt	VERB
ihlr-22948	418	5	to	to	PART
ihlr-22948	418	6	provide	provide	VERB
ihlr-22948	418	7	guidance	guidance	NOUN
ihlr-22948	418	8	for	for	ADP
ihlr-22948	418	9	the	the	DET
ihlr-22948	418	10	wide	wide	ADJ
ihlr-22948	418	11	range	range	NOUN
ihlr-22948	418	12	of	of	ADP
ihlr-22948	418	13	uses	use	NOUN
ihlr-22948	418	14	of	of	ADP
ihlr-22948	418	15	health	health	NOUN
ihlr-22948	418	16	information	information	NOUN
ihlr-22948	418	17	now	now	ADV
ihlr-22948	418	18	burgeoning	burgeon	VERB
ihlr-22948	418	19	across	across	ADP
ihlr-22948	418	20	the	the	DET
ihlr-22948	418	21	electronic	electronic	ADJ
ihlr-22948	418	22	data	datum	NOUN
ihlr-22948	418	23	landscape	landscape	NOUN
ihlr-22948	418	24	.	.	PUNCT
ihlr-22948	419	1	for	for	ADP
ihlr-22948	419	2	purposes	purpose	NOUN
ihlr-22948	419	3	of	of	ADP
ihlr-22948	419	4	this	this	DET
ihlr-22948	419	5	article	article	NOUN
ihlr-22948	419	6	,	,	PUNCT
ihlr-22948	419	7	one	one	NUM
ihlr-22948	419	8	of	of	ADP
ihlr-22948	419	9	the	the	DET
ihlr-22948	419	10	most	most	ADV
ihlr-22948	419	11	important	important	ADJ
ihlr-22948	419	12	of	of	ADP
ihlr-22948	419	13	these	these	PRON
ihlr-22948	419	14	is	be	AUX
ihlr-22948	419	15	the	the	DET
ihlr-22948	419	16	model	model	NOUN
ihlr-22948	419	17	privacy	privacy	NOUN
ihlr-22948	419	18	notice	notice	NOUN
ihlr-22948	419	19	(	(	PUNCT
ihlr-22948	419	20	“	"	PUNCT
ihlr-22948	419	21	mpn	mpn	NOUN
ihlr-22948	419	22	”	"	PUNCT
ihlr-22948	419	23	)	)	PUNCT
ihlr-22948	419	24	,	,	PUNCT
ihlr-22948	419	25	originally	originally	ADV
ihlr-22948	419	26	issued	issue	VERB
ihlr-22948	419	27	in	in	ADP
ihlr-22948	419	28	2011	2011	NUM
ihlr-22948	419	29	and	and	CCONJ
ihlr-22948	419	30	updated	update	VERB
ihlr-22948	419	31	in	in	ADP
ihlr-22948	419	32	2016	2016	NUM
ihlr-22948	419	33	and	and	CCONJ
ihlr-22948	419	34	2018.90	2018.90	NUM
ihlr-22948	419	35	the	the	DET
ihlr-22948	419	36	mpn	mpn	NOUN
ihlr-22948	419	37	is	be	AUX
ihlr-22948	419	38	designed	design	VERB
ihlr-22948	419	39	to	to	PART
ihlr-22948	419	40	be	be	AUX
ihlr-22948	419	41	a	a	DET
ihlr-22948	419	42	standard	standard	ADJ
ihlr-22948	419	43	form	form	NOUN
ihlr-22948	419	44	for	for	SCONJ
ihlr-22948	419	45	health	health	NOUN
ihlr-22948	419	46	technology	technology	NOUN
ihlr-22948	419	47	developers	developer	NOUN
ihlr-22948	419	48	to	to	PART
ihlr-22948	419	49	use	use	VERB
ihlr-22948	419	50	in	in	ADP
ihlr-22948	419	51	disclosing	disclose	VERB
ihlr-22948	419	52	their	their	PRON
ihlr-22948	419	53	practices	practice	NOUN
ihlr-22948	419	54	with	with	ADP
ihlr-22948	419	55	respect	respect	NOUN
ihlr-22948	419	56	to	to	ADP
ihlr-22948	419	57	the	the	DET
ihlr-22948	419	58	collection	collection	NOUN
ihlr-22948	419	59	of	of	ADP
ihlr-22948	419	60	health	health	NOUN
ihlr-22948	419	61	information.91	information.91	NOUN
ihlr-22948	419	62	if	if	SCONJ
ihlr-22948	419	63	registries	registry	NOUN
ihlr-22948	419	64	collect	collect	VERB
ihlr-22948	419	65	information	information	NOUN
ihlr-22948	419	66	through	through	ADP
ihlr-22948	419	67	internet	internet	NOUN
ihlr-22948	419	68	sites	site	NOUN
ihlr-22948	419	69	,	,	PUNCT
ihlr-22948	419	70	as	as	ADV
ihlr-22948	419	71	many	many	ADJ
ihlr-22948	419	72	now	now	ADV
ihlr-22948	419	73	do	do	VERB
ihlr-22948	419	74	,	,	PUNCT
ihlr-22948	419	75	they	they	PRON
ihlr-22948	419	76	will	will	AUX
ihlr-22948	419	77	need	need	VERB
ihlr-22948	419	78	to	to	PART
ihlr-22948	419	79	inform	inform	VERB
ihlr-22948	419	80	participants	participant	NOUN
ihlr-22948	419	81	of	of	ADP
ihlr-22948	419	82	their	their	PRON
ihlr-22948	419	83	privacy	privacy	NOUN
ihlr-22948	419	84	policies	policy	NOUN
ihlr-22948	419	85	.	.	PUNCT
ihlr-22948	420	1	for	for	ADP
ihlr-22948	420	2	registries	registry	NOUN
ihlr-22948	420	3	that	that	PRON
ihlr-22948	420	4	are	be	AUX
ihlr-22948	420	5	outside	outside	ADP
ihlr-22948	420	6	of	of	ADP
ihlr-22948	420	7	the	the	DET
ihlr-22948	420	8	scope	scope	NOUN
ihlr-22948	420	9	of	of	ADP
ihlr-22948	420	10	either	either	DET
ihlr-22948	420	11	hipaa	hipaa	NOUN
ihlr-22948	420	12	or	or	CCONJ
ihlr-22948	420	13	the	the	DET
ihlr-22948	420	14	common	common	ADJ
ihlr-22948	420	15	rule	rule	NOUN
ihlr-22948	420	16	,	,	PUNCT
ihlr-22948	420	17	from	from	ADP
ihlr-22948	420	18	the	the	DET
ihlr-22948	420	19	perspective	perspective	NOUN
ihlr-22948	420	20	of	of	ADP
ihlr-22948	420	21	federal	federal	ADJ
ihlr-22948	420	22	law	law	NOUN
ihlr-22948	420	23	these	these	DET
ihlr-22948	420	24	policies	policy	NOUN
ihlr-22948	420	25	need	need	VERB
ihlr-22948	420	26	only	only	ADV
ihlr-22948	420	27	comply	comply	VERB
ihlr-22948	420	28	with	with	ADP
ihlr-22948	420	29	the	the	DET
ihlr-22948	420	30	ftc	ftc	PROPN
ihlr-22948	420	31	act	act	PROPN
ihlr-22948	420	32	’s	’s	PART
ihlr-22948	420	33	prohibition	prohibition	NOUN
ihlr-22948	420	34	of	of	ADP
ihlr-22948	420	35	unfair	unfair	ADJ
ihlr-22948	420	36	or	or	CCONJ
ihlr-22948	420	37	deceptive	deceptive	ADJ
ihlr-22948	420	38	trade	trade	NOUN
ihlr-22948	420	39	practices	practice	NOUN
ihlr-22948	420	40	,	,	PUNCT
ihlr-22948	420	41	as	as	SCONJ
ihlr-22948	420	42	outlined	outline	VERB
ihlr-22948	420	43	in	in	ADP
ihlr-22948	420	44	the	the	DET
ihlr-22948	420	45	previous	previous	ADJ
ihlr-22948	420	46	section	section	NOUN
ihlr-22948	420	47	.	.	PUNCT
ihlr-22948	421	1	the	the	DET
ihlr-22948	421	2	mpn	mpn	NOUN
ihlr-22948	421	3	is	be	AUX
ihlr-22948	421	4	designed	design	VERB
ihlr-22948	421	5	with	with	ADP
ihlr-22948	421	6	these	these	DET
ihlr-22948	421	7	legal	legal	ADJ
ihlr-22948	421	8	requirements	requirement	NOUN
ihlr-22948	421	9	in	in	ADP
ihlr-22948	421	10	the	the	DET
ihlr-22948	421	11	background	background	NOUN
ihlr-22948	421	12	87	87	NUM
ihlr-22948	421	13	.	.	PUNCT
ihlr-22948	422	1	ware	ware	NOUN
ihlr-22948	422	2	,	,	PUNCT
ihlr-22948	422	3	supra	supra	PROPN
ihlr-22948	422	4	note	note	PROPN
ihlr-22948	422	5	86	86	NUM
ihlr-22948	422	6	,	,	PUNCT
ihlr-22948	422	7	at	at	ADP
ihlr-22948	422	8	xx	xx	PROPN
ihlr-22948	422	9	-	-	PUNCT
ihlr-22948	422	10	xxi	xxi	PROPN
ihlr-22948	422	11	.	.	PROPN
ihlr-22948	422	12	88	88	NUM
ihlr-22948	422	13	.	.	PUNCT
ihlr-22948	423	1	oecd	oecd	PROPN
ihlr-22948	423	2	guidelines	guideline	NOUN
ihlr-22948	423	3	on	on	ADP
ihlr-22948	423	4	the	the	DET
ihlr-22948	423	5	protection	protection	NOUN
ihlr-22948	423	6	of	of	ADP
ihlr-22948	423	7	privacy	privacy	NOUN
ihlr-22948	423	8	and	and	CCONJ
ihlr-22948	423	9	transborder	transborder	NOUN
ihlr-22948	423	10	flows	flow	NOUN
ihlr-22948	423	11	of	of	ADP
ihlr-22948	423	12	personal	personal	ADJ
ihlr-22948	423	13	data	datum	NOUN
ihlr-22948	423	14	,	,	PUNCT
ihlr-22948	423	15	org	org	PROPN
ihlr-22948	423	16	.	.	PUNCT
ihlr-22948	423	17	econ	econ	PROPN
ihlr-22948	423	18	.	.	PUNCT
ihlr-22948	424	1	co	co	PROPN
ihlr-22948	424	2	-	-	NOUN
ihlr-22948	424	3	operation	operation	NOUN
ihlr-22948	424	4	&	&	CCONJ
ihlr-22948	424	5	dev	dev	PROPN
ihlr-22948	424	6	.	.	PUNCT
ihlr-22948	425	1	(	(	PUNCT
ihlr-22948	425	2	sept	sept	PROPN
ihlr-22948	425	3	.	.	PROPN
ihlr-22948	425	4	23	23	NUM
ihlr-22948	425	5	,	,	PUNCT
ihlr-22948	425	6	1980	1980	NUM
ihlr-22948	425	7	)	)	PUNCT
ihlr-22948	425	8	,	,	PUNCT
ihlr-22948	425	9	http://www.oecd.org/sti/ieconomy/	http://www.oecd.org/sti/ieconomy/	X
ihlr-22948	425	10	oecdguidelinesontheprotectionofprivacyandtransborderflowsofpersonaldata.htm#recommendation	oecdguidelinesontheprotectionofprivacyandtransborderflowsofpersonaldata.htm#recommendation	X
ihlr-22948	425	11	[	[	X
ihlr-22948	425	12	https://perma.cc/w2yv-xcaa	https://perma.cc/w2yv-xcaa	NOUN
ihlr-22948	425	13	]	]	X
ihlr-22948	425	14	.	.	PUNCT
ihlr-22948	426	1	89	89	NUM
ihlr-22948	426	2	.	.	PUNCT
ihlr-22948	427	1	i	i	PRON
ihlr-22948	427	2	d.	d.	PROPN
ihlr-22948	427	3	90	90	NUM
ihlr-22948	427	4	.	.	PUNCT
ihlr-22948	427	5	model	model	PROPN
ihlr-22948	427	6	privacy	privacy	PROPN
ihlr-22948	427	7	note	note	NOUN
ihlr-22948	427	8	(	(	PUNCT
ihlr-22948	427	9	mpn	mpn	NOUN
ihlr-22948	427	10	)	)	PUNCT
ihlr-22948	427	11	,	,	PUNCT
ihlr-22948	427	12	healthit.gov	healthit.gov	PROPN
ihlr-22948	427	13	,	,	PUNCT
ihlr-22948	427	14	https://www.healthit.gov/topic/privacysecurity-and-hipaa/model-privacy-notice-mpn	https://www.healthit.gov/topic/privacysecurity-and-hipaa/model-privacy-notice-mpn	PUNCT
ihlr-22948	428	1	[	[	X
ihlr-22948	428	2	https://perma.cc/wbz5-mm8h	https://perma.cc/wbz5-mm8h	X
ihlr-22948	428	3	]	]	X
ihlr-22948	428	4	.	.	PUNCT
ihlr-22948	429	1	91	91	NUM
ihlr-22948	429	2	.	.	PUNCT
ihlr-22948	430	1	off	off	ADP
ihlr-22948	430	2	.	.	PUNCT
ihlr-22948	431	1	of	of	ADP
ihlr-22948	431	2	the	the	DET
ihlr-22948	431	3	nat’l	nat’l	NOUN
ihlr-22948	431	4	coordinator	coordinator	NOUN
ihlr-22948	431	5	for	for	ADP
ihlr-22948	431	6	health	health	NOUN
ihlr-22948	431	7	info	info	NOUN
ihlr-22948	431	8	.	.	PUNCT
ihlr-22948	432	1	tech	tech	NOUN
ihlr-22948	432	2	.	.	PUNCT
ihlr-22948	432	3	,	,	PUNCT
ihlr-22948	432	4	2018	2018	NUM
ihlr-22948	432	5	model	model	NOUN
ihlr-22948	432	6	privacy	privacy	NOUN
ihlr-22948	432	7	notice	notice	NOUN
ihlr-22948	432	8	(	(	PUNCT
ihlr-22948	432	9	2018	2018	NUM
ihlr-22948	432	10	)	)	PUNCT
ihlr-22948	432	11	,	,	PUNCT
ihlr-22948	432	12	https://www.healthit.gov/sites/default/files/2018modelprivacynotice.pdf	https://www.healthit.gov/sites/default/files/2018modelprivacynotice.pdf	PROPN
ihlr-22948	432	13	[	[	X
ihlr-22948	432	14	https://perma.cc/r9le-9d9n	https://perma.cc/r9le-9d9n	X
ihlr-22948	432	15	]	]	X
ihlr-22948	432	16	.	.	PUNCT
ihlr-22948	433	1	60	60	NUM
ihlr-22948	433	2	indiana	indiana	PROPN
ihlr-22948	433	3	health	health	PROPN
ihlr-22948	433	4	law	law	NOUN
ihlr-22948	433	5	review	review	NOUN
ihlr-22948	433	6	[	[	X
ihlr-22948	433	7	vol	vol	NOUN
ihlr-22948	433	8	.	.	PUNCT
ihlr-22948	433	9	16:43	16:43	NUM
ihlr-22948	433	10	and	and	CCONJ
ihlr-22948	433	11	begins	begin	VERB
ihlr-22948	433	12	with	with	ADP
ihlr-22948	433	13	a	a	DET
ihlr-22948	433	14	disclosure	disclosure	NOUN
ihlr-22948	433	15	of	of	ADP
ihlr-22948	433	16	whether	whether	SCONJ
ihlr-22948	433	17	the	the	DET
ihlr-22948	433	18	entity	entity	NOUN
ihlr-22948	433	19	collecting	collect	VERB
ihlr-22948	433	20	the	the	DET
ihlr-22948	433	21	information	information	NOUN
ihlr-22948	433	22	is	be	AUX
ihlr-22948	433	23	hipaa	hipaa	NOUN
ihlr-22948	433	24	-	-	PUNCT
ihlr-22948	433	25	covered.92	covered.92	NOUN
ihlr-22948	433	26	the	the	DET
ihlr-22948	433	27	mpn	mpn	NOUN
ihlr-22948	433	28	then	then	ADV
ihlr-22948	433	29	prompts	prompt	VERB
ihlr-22948	433	30	disclosure	disclosure	NOUN
ihlr-22948	433	31	of	of	ADP
ihlr-22948	433	32	how	how	SCONJ
ihlr-22948	433	33	data	datum	NOUN
ihlr-22948	433	34	are	be	AUX
ihlr-22948	433	35	used	use	VERB
ihlr-22948	433	36	internally	internally	ADV
ihlr-22948	433	37	,	,	PUNCT
ihlr-22948	433	38	including	include	VERB
ihlr-22948	433	39	whether	whether	SCONJ
ihlr-22948	433	40	the	the	DET
ihlr-22948	433	41	data	datum	NOUN
ihlr-22948	433	42	will	will	AUX
ihlr-22948	433	43	be	be	AUX
ihlr-22948	433	44	used	use	VERB
ihlr-22948	433	45	for	for	ADP
ihlr-22948	433	46	scientific	scientific	ADJ
ihlr-22948	433	47	research	research	NOUN
ihlr-22948	433	48	or	or	CCONJ
ihlr-22948	433	49	for	for	ADP
ihlr-22948	433	50	the	the	DET
ihlr-22948	433	51	development	development	NOUN
ihlr-22948	433	52	of	of	ADP
ihlr-22948	433	53	products.93	products.93	NOUN
ihlr-22948	433	54	it	it	PRON
ihlr-22948	433	55	also	also	ADV
ihlr-22948	433	56	prompts	prompt	VERB
ihlr-22948	433	57	disclosure	disclosure	NOUN
ihlr-22948	433	58	of	of	ADP
ihlr-22948	433	59	any	any	DET
ihlr-22948	433	60	external	external	ADJ
ihlr-22948	433	61	sharing	sharing	NOUN
ihlr-22948	433	62	of	of	ADP
ihlr-22948	433	63	data	datum	NOUN
ihlr-22948	433	64	,	,	PUNCT
ihlr-22948	433	65	including	include	VERB
ihlr-22948	433	66	whether	whether	SCONJ
ihlr-22948	433	67	it	it	PRON
ihlr-22948	433	68	will	will	AUX
ihlr-22948	433	69	be	be	AUX
ihlr-22948	433	70	used	use	VERB
ihlr-22948	433	71	for	for	ADP
ihlr-22948	433	72	research	research	NOUN
ihlr-22948	433	73	,	,	PUNCT
ihlr-22948	433	74	marketing	marketing	NOUN
ihlr-22948	433	75	,	,	PUNCT
ihlr-22948	433	76	or	or	CCONJ
ihlr-22948	433	77	development	development	NOUN
ihlr-22948	433	78	of	of	ADP
ihlr-22948	433	79	products.94	products.94	PROPN
ihlr-22948	433	80	importantly	importantly	ADV
ihlr-22948	433	81	,	,	PUNCT
ihlr-22948	433	82	it	it	PRON
ihlr-22948	433	83	requires	require	VERB
ihlr-22948	433	84	indicating	indicate	VERB
ihlr-22948	433	85	to	to	ADP
ihlr-22948	433	86	participants	participant	NOUN
ihlr-22948	433	87	whether	whether	SCONJ
ihlr-22948	433	88	their	their	PRON
ihlr-22948	433	89	data	datum	NOUN
ihlr-22948	433	90	will	will	AUX
ihlr-22948	433	91	be	be	AUX
ihlr-22948	433	92	used	use	VERB
ihlr-22948	433	93	or	or	CCONJ
ihlr-22948	433	94	shared	share	VERB
ihlr-22948	433	95	in	in	ADP
ihlr-22948	433	96	identifiable	identifiable	ADJ
ihlr-22948	433	97	form	form	NOUN
ihlr-22948	433	98	or	or	CCONJ
ihlr-22948	433	99	only	only	ADV
ihlr-22948	433	100	after	after	SCONJ
ihlr-22948	433	101	it	it	PRON
ihlr-22948	433	102	has	have	AUX
ihlr-22948	433	103	been	be	AUX
ihlr-22948	433	104	deidentified.95	deidentified.95	NOUN
ihlr-22948	433	105	it	it	PRON
ihlr-22948	433	106	also	also	ADV
ihlr-22948	433	107	requires	require	VERB
ihlr-22948	433	108	informing	inform	VERB
ihlr-22948	433	109	participants	participant	NOUN
ihlr-22948	433	110	of	of	ADP
ihlr-22948	433	111	what	what	PRON
ihlr-22948	433	112	other	other	ADJ
ihlr-22948	433	113	data	datum	NOUN
ihlr-22948	433	114	may	may	AUX
ihlr-22948	433	115	be	be	AUX
ihlr-22948	433	116	combined	combine	VERB
ihlr-22948	433	117	with	with	ADP
ihlr-22948	433	118	the	the	DET
ihlr-22948	433	119	information	information	NOUN
ihlr-22948	433	120	they	they	PRON
ihlr-22948	433	121	submit	submit	VERB
ihlr-22948	433	122	,	,	PUNCT
ihlr-22948	433	123	what	what	PRON
ihlr-22948	433	124	participants	participant	NOUN
ihlr-22948	433	125	may	may	AUX
ihlr-22948	433	126	do	do	VERB
ihlr-22948	433	127	with	with	ADP
ihlr-22948	433	128	the	the	DET
ihlr-22948	433	129	data	datum	NOUN
ihlr-22948	433	130	,	,	PUNCT
ihlr-22948	433	131	what	what	PRON
ihlr-22948	433	132	will	will	AUX
ihlr-22948	433	133	happen	happen	VERB
ihlr-22948	433	134	in	in	ADP
ihlr-22948	433	135	the	the	DET
ihlr-22948	433	136	case	case	NOUN
ihlr-22948	433	137	of	of	ADP
ihlr-22948	433	138	a	a	DET
ihlr-22948	433	139	data	data	NOUN
ihlr-22948	433	140	breach	breach	NOUN
ihlr-22948	433	141	,	,	PUNCT
ihlr-22948	433	142	what	what	PRON
ihlr-22948	433	143	will	will	AUX
ihlr-22948	433	144	happen	happen	VERB
ihlr-22948	433	145	if	if	SCONJ
ihlr-22948	433	146	participants	participant	NOUN
ihlr-22948	433	147	decide	decide	VERB
ihlr-22948	433	148	to	to	PART
ihlr-22948	433	149	end	end	VERB
ihlr-22948	433	150	their	their	PRON
ihlr-22948	433	151	participation	participation	NOUN
ihlr-22948	433	152	,	,	PUNCT
ihlr-22948	433	153	and	and	CCONJ
ihlr-22948	433	154	what	what	PRON
ihlr-22948	433	155	will	will	AUX
ihlr-22948	433	156	happen	happen	VERB
ihlr-22948	433	157	if	if	SCONJ
ihlr-22948	433	158	the	the	DET
ihlr-22948	433	159	entity	entity	NOUN
ihlr-22948	433	160	itself	itself	PRON
ihlr-22948	433	161	ceases	cease	VERB
ihlr-22948	433	162	operations.96	operations.96	PROPN
ihlr-22948	433	163	the	the	DET
ihlr-22948	433	164	federal	federal	ADJ
ihlr-22948	433	165	advisory	advisory	PROPN
ihlr-22948	433	166	committee	committee	NOUN
ihlr-22948	433	167	to	to	PART
ihlr-22948	433	168	hhs	hhs	VERB
ihlr-22948	433	169	for	for	ADP
ihlr-22948	433	170	vital	vital	ADJ
ihlr-22948	433	171	and	and	CCONJ
ihlr-22948	433	172	health	health	NOUN
ihlr-22948	433	173	statistics	statistic	NOUN
ihlr-22948	433	174	,	,	PUNCT
ihlr-22948	433	175	the	the	DET
ihlr-22948	433	176	ncvhs	ncvhs	NOUN
ihlr-22948	433	177	,	,	PUNCT
ihlr-22948	433	178	has	have	AUX
ihlr-22948	433	179	also	also	ADV
ihlr-22948	433	180	put	put	VERB
ihlr-22948	433	181	forth	forth	ADP
ihlr-22948	433	182	a	a	DET
ihlr-22948	433	183	series	series	NOUN
ihlr-22948	433	184	of	of	ADP
ihlr-22948	433	185	documents	document	NOUN
ihlr-22948	433	186	on	on	ADP
ihlr-22948	433	187	data	datum	NOUN
ihlr-22948	433	188	governance	governance	NOUN
ihlr-22948	433	189	and	and	CCONJ
ihlr-22948	433	190	stewardship	stewardship	NOUN
ihlr-22948	433	191	.	.	PUNCT
ihlr-22948	434	1	the	the	DET
ihlr-22948	434	2	ncvhs	ncvhs	ADJ
ihlr-22948	434	3	documents	document	NOUN
ihlr-22948	434	4	,	,	PUNCT
ihlr-22948	434	5	built	build	VERB
ihlr-22948	434	6	on	on	ADP
ihlr-22948	434	7	fips	fip	NOUN
ihlr-22948	434	8	,	,	PUNCT
ihlr-22948	434	9	emphasize	emphasize	VERB
ihlr-22948	434	10	transparency	transparency	NOUN
ihlr-22948	434	11	and	and	CCONJ
ihlr-22948	434	12	accountability	accountability	NOUN
ihlr-22948	434	13	in	in	ADP
ihlr-22948	434	14	data	datum	NOUN
ihlr-22948	434	15	governance.97	governance.97	NOUN
ihlr-22948	434	16	they	they	PRON
ihlr-22948	434	17	present	present	VERB
ihlr-22948	434	18	a	a	DET
ihlr-22948	434	19	number	number	NOUN
ihlr-22948	434	20	of	of	ADP
ihlr-22948	434	21	concrete	concrete	ADJ
ihlr-22948	434	22	recommendations	recommendation	NOUN
ihlr-22948	434	23	for	for	ADP
ihlr-22948	434	24	parties	party	NOUN
ihlr-22948	434	25	responsible	responsible	ADJ
ihlr-22948	434	26	for	for	ADP
ihlr-22948	434	27	data	data	NOUN
ihlr-22948	434	28	stewardship	stewardship	NOUN
ihlr-22948	434	29	,	,	PUNCT
ihlr-22948	434	30	including	include	VERB
ihlr-22948	434	31	application	application	NOUN
ihlr-22948	434	32	of	of	ADP
ihlr-22948	434	33	minimum	minimum	ADJ
ihlr-22948	434	34	necessary	necessary	ADJ
ihlr-22948	434	35	principles	principle	NOUN
ihlr-22948	434	36	in	in	ADP
ihlr-22948	434	37	data	datum	NOUN
ihlr-22948	434	38	sharing	sharing	NOUN
ihlr-22948	434	39	and	and	CCONJ
ihlr-22948	434	40	use	use	VERB
ihlr-22948	434	41	and	and	CCONJ
ihlr-22948	434	42	care	care	VERB
ihlr-22948	434	43	in	in	ADP
ihlr-22948	434	44	assuring	assure	VERB
ihlr-22948	434	45	that	that	SCONJ
ihlr-22948	434	46	any	any	DET
ihlr-22948	434	47	data	data	NOUN
ihlr-22948	434	48	transfers	transfer	NOUN
ihlr-22948	434	49	are	be	AUX
ihlr-22948	434	50	carefully	carefully	ADV
ihlr-22948	434	51	monitored	monitor	VERB
ihlr-22948	434	52	to	to	PART
ihlr-22948	434	53	assure	assure	VERB
ihlr-22948	434	54	that	that	SCONJ
ihlr-22948	434	55	they	they	PRON
ihlr-22948	434	56	occur	occur	VERB
ihlr-22948	434	57	as	as	SCONJ
ihlr-22948	434	58	planned.98	planned.98	NOUN
ihlr-22948	434	59	they	they	PRON
ihlr-22948	434	60	also	also	ADV
ihlr-22948	434	61	recommend	recommend	VERB
ihlr-22948	434	62	clear	clear	ADJ
ihlr-22948	434	63	accountability	accountability	NOUN
ihlr-22948	434	64	and	and	CCONJ
ihlr-22948	434	65	the	the	DET
ihlr-22948	434	66	development	development	NOUN
ihlr-22948	434	67	of	of	ADP
ihlr-22948	434	68	mechanisms	mechanism	NOUN
ihlr-22948	434	69	to	to	PART
ihlr-22948	434	70	both	both	PRON
ihlr-22948	434	71	identify	identify	VERB
ihlr-22948	434	72	any	any	DET
ihlr-22948	434	73	failures	failure	NOUN
ihlr-22948	434	74	,	,	PUNCT
ihlr-22948	434	75	attach	attach	VERB
ihlr-22948	434	76	consequences	consequence	NOUN
ihlr-22948	434	77	to	to	ADP
ihlr-22948	434	78	responsible	responsible	ADJ
ihlr-22948	434	79	parties	party	NOUN
ihlr-22948	434	80	,	,	PUNCT
ihlr-22948	434	81	remediate	remediate	VERB
ihlr-22948	434	82	any	any	DET
ihlr-22948	434	83	harms	harm	NOUN
ihlr-22948	434	84	,	,	PUNCT
ihlr-22948	434	85	and	and	CCONJ
ihlr-22948	434	86	pursue	pursue	VERB
ihlr-22948	434	87	needed	need	VERB
ihlr-22948	434	88	corrective	corrective	ADJ
ihlr-22948	434	89	action.99	action.99	NOUN
ihlr-22948	434	90	v.	v.	ADP
ihlr-22948	434	91	registry	registry	NOUN
ihlr-22948	434	92	practices	practice	NOUN
ihlr-22948	434	93	to	to	PART
ihlr-22948	434	94	ascertain	ascertain	VERB
ihlr-22948	434	95	the	the	DET
ihlr-22948	434	96	extent	extent	NOUN
ihlr-22948	434	97	to	to	PART
ihlr-22948	434	98	which	which	PRON
ihlr-22948	434	99	registries	registry	NOUN
ihlr-22948	434	100	are	be	AUX
ihlr-22948	434	101	guided	guide	VERB
ihlr-22948	434	102	by	by	ADP
ihlr-22948	434	103	fair	fair	ADJ
ihlr-22948	434	104	information	information	NOUN
ihlr-22948	434	105	practices	practice	NOUN
ihlr-22948	434	106	and	and	CCONJ
ihlr-22948	434	107	methods	method	NOUN
ihlr-22948	434	108	of	of	ADP
ihlr-22948	434	109	data	datum	NOUN
ihlr-22948	434	110	stewardship	stewardship	NOUN
ihlr-22948	434	111	,	,	PUNCT
ihlr-22948	434	112	the	the	DET
ihlr-22948	434	113	authors	author	NOUN
ihlr-22948	434	114	conducted	conduct	VERB
ihlr-22948	434	115	telephone	telephone	NOUN
ihlr-22948	434	116	interviews	interview	NOUN
ihlr-22948	434	117	with	with	ADP
ihlr-22948	434	118	a	a	DET
ihlr-22948	434	119	selected	select	VERB
ihlr-22948	434	120	group	group	NOUN
ihlr-22948	434	121	of	of	ADP
ihlr-22948	434	122	registries	registry	NOUN
ihlr-22948	434	123	.	.	PUNCT
ihlr-22948	435	1	this	this	DET
ihlr-22948	435	2	section	section	NOUN
ihlr-22948	435	3	describes	describe	VERB
ihlr-22948	435	4	research	research	NOUN
ihlr-22948	435	5	methods	method	NOUN
ihlr-22948	435	6	and	and	CCONJ
ihlr-22948	435	7	study	study	NOUN
ihlr-22948	435	8	results	result	NOUN
ihlr-22948	435	9	.	.	PUNCT
ihlr-22948	436	1	the	the	DET
ihlr-22948	436	2	study	study	NOUN
ihlr-22948	436	3	was	be	AUX
ihlr-22948	436	4	approved	approve	VERB
ihlr-22948	436	5	by	by	ADP
ihlr-22948	436	6	the	the	DET
ihlr-22948	436	7	university	university	PROPN
ihlr-22948	436	8	of	of	ADP
ihlr-22948	436	9	utah	utah	PROPN
ihlr-22948	436	10	institutional	institutional	PROPN
ihlr-22948	436	11	review	review	PROPN
ihlr-22948	436	12	board	board	NOUN
ihlr-22948	436	13	and	and	CCONJ
ihlr-22948	436	14	funded	fund	VERB
ihlr-22948	436	15	by	by	ADP
ihlr-22948	436	16	the	the	DET
ihlr-22948	436	17	utah	utah	PROPN
ihlr-22948	436	18	center	center	NOUN
ihlr-22948	436	19	for	for	ADP
ihlr-22948	436	20	excellence	excellence	NOUN
ihlr-22948	436	21	in	in	ADP
ihlr-22948	436	22	elsi	elsi	ADJ
ihlr-22948	436	23	research	research	NOUN
ihlr-22948	436	24	(	(	PUNCT
ihlr-22948	436	25	“	"	PUNCT
ihlr-22948	436	26	uceer	uceer	NOUN
ihlr-22948	436	27	”	"	PUNCT
ihlr-22948	436	28	)	)	PUNCT
ihlr-22948	436	29	.	.	PUNCT
ihlr-22948	437	1	the	the	DET
ihlr-22948	437	2	study	study	NOUN
ihlr-22948	437	3	was	be	AUX
ihlr-22948	437	4	a	a	DET
ihlr-22948	437	5	pilot	pilot	NOUN
ihlr-22948	437	6	and	and	CCONJ
ihlr-22948	437	7	represents	represent	VERB
ihlr-22948	437	8	at	at	ADP
ihlr-22948	437	9	best	good	ADJ
ihlr-22948	437	10	a	a	DET
ihlr-22948	437	11	snapshot	snapshot	NOUN
ihlr-22948	437	12	of	of	ADP
ihlr-22948	437	13	practices	practice	NOUN
ihlr-22948	437	14	of	of	ADP
ihlr-22948	437	15	the	the	DET
ihlr-22948	437	16	registries	registry	NOUN
ihlr-22948	437	17	contacted	contact	VERB
ihlr-22948	437	18	.	.	PUNCT
ihlr-22948	438	1	nonetheless	nonetheless	ADV
ihlr-22948	438	2	,	,	PUNCT
ihlr-22948	438	3	it	it	PRON
ihlr-22948	438	4	is	be	AUX
ihlr-22948	438	5	clear	clear	ADJ
ihlr-22948	438	6	that	that	SCONJ
ihlr-22948	438	7	registry	registry	NOUN
ihlr-22948	438	8	practices	practice	NOUN
ihlr-22948	438	9	vary	vary	VERB
ihlr-22948	438	10	substantially	substantially	ADV
ihlr-22948	438	11	and	and	CCONJ
ihlr-22948	438	12	that	that	SCONJ
ihlr-22948	438	13	at	at	ADV
ihlr-22948	438	14	least	least	ADJ
ihlr-22948	438	15	some	some	PRON
ihlr-22948	438	16	registries	registry	NOUN
ihlr-22948	438	17	desire	desire	VERB
ihlr-22948	438	18	more	more	ADV
ihlr-22948	438	19	specific	specific	ADJ
ihlr-22948	438	20	guidelines	guideline	NOUN
ihlr-22948	438	21	about	about	ADP
ihlr-22948	438	22	practices	practice	NOUN
ihlr-22948	438	23	to	to	PART
ihlr-22948	438	24	use	use	VERB
ihlr-22948	438	25	in	in	ADP
ihlr-22948	438	26	managing	manage	VERB
ihlr-22948	438	27	the	the	DET
ihlr-22948	438	28	data	datum	NOUN
ihlr-22948	438	29	they	they	PRON
ihlr-22948	438	30	contain	contain	VERB
ihlr-22948	438	31	.	.	PUNCT
ihlr-22948	439	1	92	92	NUM
ihlr-22948	439	2	.	.	PUNCT
ihlr-22948	440	1	i	i	PRON
ihlr-22948	440	2	d.	d.	PROPN
ihlr-22948	440	3	at	at	ADP
ihlr-22948	440	4	2	2	NUM
ihlr-22948	440	5	.	.	NUM
ihlr-22948	440	6	93	93	NUM
ihlr-22948	440	7	.	.	PUNCT
ihlr-22948	441	1	i	i	PRON
ihlr-22948	441	2	d.	d.	PROPN
ihlr-22948	441	3	94	94	NUM
ihlr-22948	441	4	.	.	PUNCT
ihlr-22948	442	1	i	i	PRON
ihlr-22948	442	2	d.	d.	PROPN
ihlr-22948	442	3	95	95	NUM
ihlr-22948	442	4	.	.	PUNCT
ihlr-22948	443	1	i	i	PRON
ihlr-22948	443	2	d.	d.	PROPN
ihlr-22948	443	3	96	96	NUM
ihlr-22948	443	4	.	.	PUNCT
ihlr-22948	444	1	i	i	PRON
ihlr-22948	444	2	d.	d.	PROPN
ihlr-22948	444	3	at	at	ADP
ihlr-22948	444	4	4	4	NUM
ihlr-22948	444	5	.	.	NUM
ihlr-22948	444	6	97	97	NUM
ihlr-22948	444	7	.	.	PUNCT
ihlr-22948	445	1	nat’l	nat’l	PROPN
ihlr-22948	445	2	comm	comm	NOUN
ihlr-22948	445	3	.	.	PUNCT
ihlr-22948	446	1	on	on	ADP
ihlr-22948	446	2	vital	vital	ADJ
ihlr-22948	446	3	&	&	CCONJ
ihlr-22948	446	4	health	health	PROPN
ihlr-22948	446	5	statistics	statistic	NOUN
ihlr-22948	446	6	,	,	PUNCT
ihlr-22948	446	7	health	health	NOUN
ihlr-22948	446	8	data	datum	NOUN
ihlr-22948	446	9	stewardship	stewardship	NOUN
ihlr-22948	446	10	:	:	PUNCT
ihlr-22948	446	11	what	what	PRON
ihlr-22948	446	12	,	,	PUNCT
ihlr-22948	446	13	why	why	SCONJ
ihlr-22948	446	14	,	,	PUNCT
ihlr-22948	446	15	who	who	PRON
ihlr-22948	446	16	,	,	PUNCT
ihlr-22948	446	17	how	how	SCONJ
ihlr-22948	446	18	:	:	PUNCT
ihlr-22948	446	19	an	an	DET
ihlr-22948	446	20	ncvhs	ncvhs	ADJ
ihlr-22948	446	21	primer	primer	NOUN
ihlr-22948	446	22	(	(	PUNCT
ihlr-22948	446	23	2009	2009	NUM
ihlr-22948	446	24	)	)	PUNCT
ihlr-22948	446	25	,	,	PUNCT
ihlr-22948	446	26	https://ncvhs.hhs.gov/wp-content/uploads/	https://ncvhs.hhs.gov/wp-content/uploads/	PROPN
ihlr-22948	446	27	2014/05/090930lt.pdf	2014/05/090930lt.pdf	PROPN
ihlr-22948	447	1	[	[	X
ihlr-22948	447	2	https://perma.cc/ug2z-xwgt	https://perma.cc/ug2z-xwgt	X
ihlr-22948	447	3	]	]	X
ihlr-22948	447	4	.	.	PUNCT
ihlr-22948	448	1	98	98	NUM
ihlr-22948	448	2	.	.	PUNCT
ihlr-22948	449	1	i	i	PRON
ihlr-22948	449	2	d.	d.	PROPN
ihlr-22948	449	3	99	99	NUM
ihlr-22948	449	4	.	.	PUNCT
ihlr-22948	450	1	i	i	PRON
ihlr-22948	450	2	d.	d.	PROPN
ihlr-22948	450	3	2018	2018	NUM
ihlr-22948	450	4	]	]	PUNCT
ihlr-22948	450	5	patient	patient	ADJ
ihlr-22948	450	6	registries	registry	NOUN
ihlr-22948	450	7	and	and	CCONJ
ihlr-22948	450	8	their	their	PRON
ihlr-22948	450	9	governance	governance	NOUN
ihlr-22948	450	10	61	61	NUM
ihlr-22948	450	11	a.	a.	NOUN
ihlr-22948	450	12	study	study	NOUN
ihlr-22948	450	13	methods	method	NOUN
ihlr-22948	450	14	to	to	PART
ihlr-22948	450	15	select	select	VERB
ihlr-22948	450	16	registries	registry	NOUN
ihlr-22948	450	17	for	for	ADP
ihlr-22948	450	18	interview	interview	NOUN
ihlr-22948	450	19	,	,	PUNCT
ihlr-22948	450	20	the	the	DET
ihlr-22948	450	21	authors	author	NOUN
ihlr-22948	450	22	began	begin	VERB
ihlr-22948	450	23	with	with	ADP
ihlr-22948	450	24	the	the	DET
ihlr-22948	450	25	registries	registry	NOUN
ihlr-22948	450	26	and	and	CCONJ
ihlr-22948	450	27	registry	registry	NOUN
ihlr-22948	450	28	groups	group	NOUN
ihlr-22948	450	29	listed	list	VERB
ihlr-22948	450	30	on	on	ADP
ihlr-22948	450	31	the	the	DET
ihlr-22948	450	32	nih	nih	PROPN
ihlr-22948	450	33	registry	registry	PROPN
ihlr-22948	450	34	webpage.100	webpage.100	ADP
ihlr-22948	450	35	contact	contact	NOUN
ihlr-22948	450	36	attempts	attempt	NOUN
ihlr-22948	450	37	were	be	AUX
ihlr-22948	450	38	made	make	VERB
ihlr-22948	450	39	for	for	ADP
ihlr-22948	450	40	all	all	DET
ihlr-22948	450	41	registries	registry	NOUN
ihlr-22948	450	42	listing	list	VERB
ihlr-22948	450	43	contact	contact	NOUN
ihlr-22948	450	44	information	information	NOUN
ihlr-22948	450	45	and	and	CCONJ
ihlr-22948	450	46	collecting	collect	VERB
ihlr-22948	450	47	data	datum	NOUN
ihlr-22948	450	48	longitudinally	longitudinally	ADV
ihlr-22948	450	49	rather	rather	ADV
ihlr-22948	450	50	than	than	ADP
ihlr-22948	450	51	at	at	ADP
ihlr-22948	450	52	a	a	DET
ihlr-22948	450	53	single	single	ADJ
ihlr-22948	450	54	point	point	NOUN
ihlr-22948	450	55	in	in	ADP
ihlr-22948	450	56	time	time	NOUN
ihlr-22948	450	57	,	,	PUNCT
ihlr-22948	450	58	a	a	DET
ihlr-22948	450	59	total	total	NOUN
ihlr-22948	450	60	of	of	ADP
ihlr-22948	450	61	fifty	fifty	NUM
ihlr-22948	450	62	-	-	PUNCT
ihlr-22948	450	63	nine	nine	NUM
ihlr-22948	450	64	registries	registry	NOUN
ihlr-22948	450	65	.	.	PUNCT
ihlr-22948	451	1	contact	contact	NOUN
ihlr-22948	451	2	was	be	AUX
ihlr-22948	451	3	initiated	initiate	VERB
ihlr-22948	451	4	first	first	ADV
ihlr-22948	451	5	with	with	ADP
ihlr-22948	451	6	an	an	DET
ihlr-22948	451	7	email	email	NOUN
ihlr-22948	451	8	providing	provide	VERB
ihlr-22948	451	9	a	a	DET
ihlr-22948	451	10	brief	brief	ADJ
ihlr-22948	451	11	background	background	NOUN
ihlr-22948	451	12	of	of	ADP
ihlr-22948	451	13	the	the	DET
ihlr-22948	451	14	s.j	s.j	PROPN
ihlr-22948	451	15	.	.	PROPN
ihlr-22948	452	1	quinney	quinney	PROPN
ihlr-22948	452	2	college	college	PROPN
ihlr-22948	452	3	of	of	ADP
ihlr-22948	452	4	law	law	NOUN
ihlr-22948	452	5	’s	’s	PART
ihlr-22948	452	6	center	center	NOUN
ihlr-22948	452	7	for	for	ADP
ihlr-22948	452	8	law	law	NOUN
ihlr-22948	452	9	and	and	CCONJ
ihlr-22948	452	10	biomedical	biomedical	ADJ
ihlr-22948	452	11	sciences	science	NOUN
ihlr-22948	452	12	and	and	CCONJ
ihlr-22948	452	13	explaining	explain	VERB
ihlr-22948	452	14	the	the	DET
ihlr-22948	452	15	study	study	NOUN
ihlr-22948	452	16	objectives	objective	NOUN
ihlr-22948	452	17	.	.	PUNCT
ihlr-22948	453	1	contact	contact	NOUN
ihlr-22948	453	2	was	be	AUX
ihlr-22948	453	3	successfully	successfully	ADV
ihlr-22948	453	4	made	make	VERB
ihlr-22948	453	5	with	with	ADP
ihlr-22948	453	6	thirty	thirty	NUM
ihlr-22948	453	7	registries	registry	NOUN
ihlr-22948	453	8	and	and	CCONJ
ihlr-22948	453	9	interviews	interview	NOUN
ihlr-22948	453	10	were	be	AUX
ihlr-22948	453	11	ultimately	ultimately	ADV
ihlr-22948	453	12	conducted	conduct	VERB
ihlr-22948	453	13	with	with	ADP
ihlr-22948	453	14	twenty	twenty	NUM
ihlr-22948	453	15	who	who	PRON
ihlr-22948	453	16	agreed	agree	VERB
ihlr-22948	453	17	to	to	PART
ihlr-22948	453	18	discuss	discuss	VERB
ihlr-22948	453	19	their	their	PRON
ihlr-22948	453	20	registry	registry	NOUN
ihlr-22948	453	21	’s	’s	PART
ihlr-22948	453	22	practices	practice	NOUN
ihlr-22948	453	23	;	;	PUNCT
ihlr-22948	453	24	seventeen	seventeen	NUM
ihlr-22948	453	25	of	of	ADP
ihlr-22948	453	26	these	these	DET
ihlr-22948	453	27	registries	registry	NOUN
ihlr-22948	453	28	provided	provide	VERB
ihlr-22948	453	29	sufficient	sufficient	ADJ
ihlr-22948	453	30	information	information	NOUN
ihlr-22948	453	31	to	to	PART
ihlr-22948	453	32	be	be	AUX
ihlr-22948	453	33	used	use	VERB
ihlr-22948	453	34	in	in	ADP
ihlr-22948	453	35	the	the	DET
ihlr-22948	453	36	analysis	analysis	NOUN
ihlr-22948	453	37	that	that	PRON
ihlr-22948	453	38	follows	follow	VERB
ihlr-22948	453	39	.	.	PUNCT
ihlr-22948	454	1	population	population	NOUN
ihlr-22948	454	2	sizes	size	NOUN
ihlr-22948	454	3	vary	vary	VERB
ihlr-22948	454	4	across	across	ADP
ihlr-22948	454	5	the	the	DET
ihlr-22948	454	6	registries	registry	NOUN
ihlr-22948	454	7	contacted	contact	VERB
ihlr-22948	454	8	,	,	PUNCT
ihlr-22948	454	9	from	from	ADP
ihlr-22948	454	10	approximately	approximately	ADV
ihlr-22948	454	11	200	200	NUM
ihlr-22948	454	12	to	to	PART
ihlr-22948	454	13	over	over	ADP
ihlr-22948	454	14	three	three	NUM
ihlr-22948	454	15	-	-	PUNCT
ihlr-22948	454	16	quarters	quarter	NOUN
ihlr-22948	454	17	of	of	ADP
ihlr-22948	454	18	a	a	DET
ihlr-22948	454	19	million	million	NUM
ihlr-22948	454	20	participants	participant	NOUN
ihlr-22948	454	21	.	.	PUNCT
ihlr-22948	455	1	disease	disease	NOUN
ihlr-22948	455	2	types	type	NOUN
ihlr-22948	455	3	varied	varied	ADJ
ihlr-22948	455	4	as	as	ADV
ihlr-22948	455	5	well	well	ADV
ihlr-22948	455	6	.	.	PUNCT
ihlr-22948	456	1	registries	registry	NOUN
ihlr-22948	456	2	were	be	AUX
ihlr-22948	456	3	promised	promise	VERB
ihlr-22948	456	4	confidentiality	confidentiality	NOUN
ihlr-22948	456	5	and	and	CCONJ
ihlr-22948	456	6	the	the	DET
ihlr-22948	456	7	discussion	discussion	NOUN
ihlr-22948	456	8	that	that	PRON
ihlr-22948	456	9	follows	follow	VERB
ihlr-22948	456	10	reports	report	NOUN
ihlr-22948	456	11	only	only	ADV
ihlr-22948	456	12	aggregate	aggregate	VERB
ihlr-22948	456	13	information	information	NOUN
ihlr-22948	456	14	or	or	CCONJ
ihlr-22948	456	15	information	information	NOUN
ihlr-22948	456	16	in	in	ADP
ihlr-22948	456	17	which	which	PRON
ihlr-22948	456	18	no	no	DET
ihlr-22948	456	19	registries	registry	NOUN
ihlr-22948	456	20	are	be	AUX
ihlr-22948	456	21	identified	identify	VERB
ihlr-22948	456	22	.	.	PUNCT
ihlr-22948	457	1	interviews	interview	NOUN
ihlr-22948	457	2	were	be	AUX
ihlr-22948	457	3	conducted	conduct	VERB
ihlr-22948	457	4	by	by	ADP
ihlr-22948	457	5	telephone	telephone	NOUN
ihlr-22948	457	6	by	by	ADP
ihlr-22948	457	7	michael	michael	PROPN
ihlr-22948	457	8	squires	squires	PROPN
ihlr-22948	457	9	;	;	PUNCT
ihlr-22948	457	10	they	they	PRON
ihlr-22948	457	11	were	be	AUX
ihlr-22948	457	12	not	not	PART
ihlr-22948	457	13	recorded	record	VERB
ihlr-22948	457	14	but	but	CCONJ
ihlr-22948	457	15	detailed	detailed	ADJ
ihlr-22948	457	16	notes	note	NOUN
ihlr-22948	457	17	were	be	AUX
ihlr-22948	457	18	kept.101	kept.101	ADJ
ihlr-22948	457	19	the	the	DET
ihlr-22948	457	20	interviews	interview	NOUN
ihlr-22948	457	21	followed	follow	VERB
ihlr-22948	457	22	a	a	DET
ihlr-22948	457	23	scripted	script	VERB
ihlr-22948	457	24	questionnaire	questionnaire	NOUN
ihlr-22948	457	25	.	.	PUNCT
ihlr-22948	458	1	the	the	DET
ihlr-22948	458	2	questionnaire	questionnaire	NOUN
ihlr-22948	458	3	was	be	AUX
ihlr-22948	458	4	based	base	VERB
ihlr-22948	458	5	on	on	ADP
ihlr-22948	458	6	the	the	DET
ihlr-22948	458	7	authors	author	NOUN
ihlr-22948	458	8	’	’	PART
ihlr-22948	458	9	review	review	NOUN
ihlr-22948	458	10	of	of	ADP
ihlr-22948	458	11	the	the	DET
ihlr-22948	458	12	fips	fip	NOUN
ihlr-22948	458	13	and	and	CCONJ
ihlr-22948	458	14	registry	registry	NOUN
ihlr-22948	458	15	governance	governance	NOUN
ihlr-22948	458	16	materials	material	NOUN
ihlr-22948	458	17	outlined	outline	VERB
ihlr-22948	458	18	in	in	ADP
ihlr-22948	458	19	the	the	DET
ihlr-22948	458	20	prior	prior	ADJ
ihlr-22948	458	21	section	section	NOUN
ihlr-22948	458	22	.	.	PUNCT
ihlr-22948	459	1	each	each	DET
ihlr-22948	459	2	section	section	NOUN
ihlr-22948	459	3	of	of	ADP
ihlr-22948	459	4	the	the	DET
ihlr-22948	459	5	questionnaire	questionnaire	NOUN
ihlr-22948	459	6	was	be	AUX
ihlr-22948	459	7	aimed	aim	VERB
ihlr-22948	459	8	at	at	ADP
ihlr-22948	459	9	quickly	quickly	ADV
ihlr-22948	459	10	identifying	identify	VERB
ihlr-22948	459	11	essential	essential	ADJ
ihlr-22948	459	12	registry	registry	NOUN
ihlr-22948	459	13	information	information	NOUN
ihlr-22948	459	14	.	.	PUNCT
ihlr-22948	460	1	there	there	PRON
ihlr-22948	460	2	were	be	VERB
ihlr-22948	460	3	four	four	NUM
ihlr-22948	460	4	main	main	ADJ
ihlr-22948	460	5	sections	section	NOUN
ihlr-22948	460	6	:	:	PUNCT
ihlr-22948	460	7	(	(	PUNCT
ihlr-22948	460	8	1	1	X
ihlr-22948	460	9	)	)	PUNCT
ihlr-22948	460	10	registry	registry	NOUN
ihlr-22948	460	11	governance	governance	NOUN
ihlr-22948	460	12	;	;	PUNCT
ihlr-22948	460	13	(	(	PUNCT
ihlr-22948	460	14	2	2	X
ihlr-22948	460	15	)	)	PUNCT
ihlr-22948	460	16	registry	registry	NOUN
ihlr-22948	460	17	funding	funding	NOUN
ihlr-22948	460	18	;	;	PUNCT
ihlr-22948	460	19	(	(	PUNCT
ihlr-22948	460	20	3	3	X
ihlr-22948	460	21	)	)	PUNCT
ihlr-22948	460	22	registry	registry	NOUN
ihlr-22948	460	23	population	population	NOUN
ihlr-22948	460	24	and	and	CCONJ
ihlr-22948	460	25	consent	consent	NOUN
ihlr-22948	460	26	;	;	PUNCT
ihlr-22948	460	27	and	and	CCONJ
ihlr-22948	460	28	(	(	PUNCT
ihlr-22948	460	29	4	4	X
ihlr-22948	460	30	)	)	PUNCT
ihlr-22948	460	31	data	datum	NOUN
ihlr-22948	460	32	protection	protection	NOUN
ihlr-22948	460	33	and	and	CCONJ
ihlr-22948	460	34	privacy	privacy	NOUN
ihlr-22948	460	35	of	of	ADP
ihlr-22948	460	36	registry	registry	NOUN
ihlr-22948	460	37	participants	participant	NOUN
ihlr-22948	460	38	.	.	PUNCT
ihlr-22948	461	1	in	in	ADP
ihlr-22948	461	2	all	all	PRON
ihlr-22948	461	3	,	,	PUNCT
ihlr-22948	461	4	the	the	DET
ihlr-22948	461	5	interviews	interview	NOUN
ihlr-22948	461	6	provide	provide	VERB
ihlr-22948	461	7	a	a	DET
ihlr-22948	461	8	skeleton	skeleton	NOUN
ihlr-22948	461	9	understanding	understanding	NOUN
ihlr-22948	461	10	of	of	ADP
ihlr-22948	461	11	the	the	DET
ihlr-22948	461	12	registry	registry	NOUN
ihlr-22948	461	13	landscape	landscape	NOUN
ihlr-22948	461	14	.	.	PUNCT
ihlr-22948	462	1	some	some	DET
ihlr-22948	462	2	registries	registry	NOUN
ihlr-22948	462	3	were	be	AUX
ihlr-22948	462	4	reluctant	reluctant	ADJ
ihlr-22948	462	5	to	to	PART
ihlr-22948	462	6	answer	answer	VERB
ihlr-22948	462	7	some	some	PRON
ihlr-22948	462	8	of	of	ADP
ihlr-22948	462	9	the	the	DET
ihlr-22948	462	10	questions	question	NOUN
ihlr-22948	462	11	due	due	ADJ
ihlr-22948	462	12	to	to	ADP
ihlr-22948	462	13	liability	liability	NOUN
ihlr-22948	462	14	concerns	concern	NOUN
ihlr-22948	462	15	.	.	PUNCT
ihlr-22948	463	1	some	some	DET
ihlr-22948	463	2	registries	registry	NOUN
ihlr-22948	463	3	were	be	AUX
ihlr-22948	463	4	also	also	ADV
ihlr-22948	463	5	unable	unable	ADJ
ihlr-22948	463	6	to	to	PART
ihlr-22948	463	7	answer	answer	VERB
ihlr-22948	463	8	the	the	DET
ihlr-22948	463	9	questions	question	NOUN
ihlr-22948	463	10	during	during	ADP
ihlr-22948	463	11	the	the	DET
ihlr-22948	463	12	interview	interview	NOUN
ihlr-22948	463	13	because	because	SCONJ
ihlr-22948	463	14	the	the	DET
ihlr-22948	463	15	person	person	NOUN
ihlr-22948	463	16	contacted	contact	VERB
ihlr-22948	463	17	at	at	ADP
ihlr-22948	463	18	the	the	DET
ihlr-22948	463	19	registry	registry	NOUN
ihlr-22948	463	20	simply	simply	ADV
ihlr-22948	463	21	did	do	AUX
ihlr-22948	463	22	not	not	PART
ihlr-22948	463	23	know	know	VERB
ihlr-22948	463	24	the	the	DET
ihlr-22948	463	25	answer	answer	NOUN
ihlr-22948	463	26	.	.	PUNCT
ihlr-22948	464	1	some	some	DET
ihlr-22948	464	2	registries	registry	NOUN
ihlr-22948	464	3	asked	ask	VERB
ihlr-22948	464	4	for	for	ADP
ihlr-22948	464	5	findings	finding	NOUN
ihlr-22948	464	6	to	to	PART
ihlr-22948	464	7	be	be	AUX
ihlr-22948	464	8	shared	share	VERB
ihlr-22948	464	9	with	with	ADP
ihlr-22948	464	10	them	they	PRON
ihlr-22948	464	11	to	to	PART
ihlr-22948	464	12	enable	enable	VERB
ihlr-22948	464	13	them	they	PRON
ihlr-22948	464	14	to	to	PART
ihlr-22948	464	15	improve	improve	VERB
ihlr-22948	464	16	their	their	PRON
ihlr-22948	464	17	practices	practice	NOUN
ihlr-22948	464	18	.	.	PUNCT
ihlr-22948	465	1	of	of	ADP
ihlr-22948	465	2	particular	particular	ADJ
ihlr-22948	465	3	note	note	NOUN
ihlr-22948	465	4	going	go	VERB
ihlr-22948	465	5	forward	forward	ADV
ihlr-22948	465	6	,	,	PUNCT
ihlr-22948	465	7	no	no	DET
ihlr-22948	465	8	registry	registry	NOUN
ihlr-22948	465	9	was	be	AUX
ihlr-22948	465	10	willing	willing	ADJ
ihlr-22948	465	11	to	to	PART
ihlr-22948	465	12	agree	agree	VERB
ihlr-22948	465	13	to	to	PART
ihlr-22948	465	14	participate	participate	VERB
ihlr-22948	465	15	in	in	ADP
ihlr-22948	465	16	a	a	DET
ihlr-22948	465	17	study	study	NOUN
ihlr-22948	465	18	that	that	PRON
ihlr-22948	465	19	would	would	AUX
ihlr-22948	465	20	involve	involve	VERB
ihlr-22948	465	21	registry	registry	NOUN
ihlr-22948	465	22	participants	participant	NOUN
ihlr-22948	465	23	and	and	CCONJ
ihlr-22948	465	24	that	that	PRON
ihlr-22948	465	25	might	might	AUX
ihlr-22948	465	26	involve	involve	VERB
ihlr-22948	465	27	questions	question	NOUN
ihlr-22948	465	28	about	about	ADP
ihlr-22948	465	29	participants	participant	NOUN
ihlr-22948	465	30	’	'	PUNCT
ihlr-22948	465	31	knowledge	knowledge	NOUN
ihlr-22948	465	32	about	about	ADP
ihlr-22948	465	33	their	their	PRON
ihlr-22948	465	34	participation	participation	NOUN
ihlr-22948	465	35	in	in	ADP
ihlr-22948	465	36	the	the	DET
ihlr-22948	465	37	registry	registry	NOUN
ihlr-22948	465	38	,	,	PUNCT
ihlr-22948	465	39	registry	registry	NOUN
ihlr-22948	465	40	uses	use	NOUN
ihlr-22948	465	41	and	and	CCONJ
ihlr-22948	465	42	protection	protection	NOUN
ihlr-22948	465	43	of	of	ADP
ihlr-22948	465	44	information	information	NOUN
ihlr-22948	465	45	,	,	PUNCT
ihlr-22948	465	46	or	or	CCONJ
ihlr-22948	465	47	other	other	ADJ
ihlr-22948	465	48	registry	registry	NOUN
ihlr-22948	465	49	matters	matter	NOUN
ihlr-22948	465	50	such	such	ADJ
ihlr-22948	465	51	as	as	ADP
ihlr-22948	465	52	governance	governance	NOUN
ihlr-22948	465	53	or	or	CCONJ
ihlr-22948	465	54	financing	financing	NOUN
ihlr-22948	465	55	.	.	PUNCT
ihlr-22948	466	1	b.	b.	PROPN
ihlr-22948	466	2	study	study	PROPN
ihlr-22948	466	3	findings	finding	VERB
ihlr-22948	466	4	this	this	DET
ihlr-22948	466	5	section	section	NOUN
ihlr-22948	466	6	reports	report	NOUN
ihlr-22948	466	7	study	study	NOUN
ihlr-22948	466	8	findings	finding	NOUN
ihlr-22948	466	9	with	with	ADP
ihlr-22948	466	10	respect	respect	NOUN
ihlr-22948	466	11	to	to	ADP
ihlr-22948	466	12	the	the	DET
ihlr-22948	466	13	four	four	NUM
ihlr-22948	466	14	targeted	target	VERB
ihlr-22948	466	15	questionnaire	questionnaire	NOUN
ihlr-22948	466	16	areas	area	NOUN
ihlr-22948	466	17	:	:	PUNCT
ihlr-22948	466	18	governance	governance	NOUN
ihlr-22948	466	19	,	,	PUNCT
ihlr-22948	466	20	funding	funding	NOUN
ihlr-22948	466	21	,	,	PUNCT
ihlr-22948	466	22	registry	registry	NOUN
ihlr-22948	466	23	populations	population	NOUN
ihlr-22948	466	24	,	,	PUNCT
ihlr-22948	466	25	and	and	CCONJ
ihlr-22948	466	26	privacy	privacy	NOUN
ihlr-22948	466	27	.	.	PUNCT
ihlr-22948	467	1	1	1	X
ihlr-22948	467	2	.	.	X
ihlr-22948	467	3	registry	registry	NOUN
ihlr-22948	467	4	governance	governance	PROPN
ihlr-22948	467	5	registry	registry	NOUN
ihlr-22948	467	6	governance	governance	NOUN
ihlr-22948	467	7	involves	involve	VERB
ihlr-22948	467	8	whether	whether	SCONJ
ihlr-22948	467	9	the	the	DET
ihlr-22948	467	10	registry	registry	NOUN
ihlr-22948	467	11	has	have	AUX
ihlr-22948	467	12	stated	state	VERB
ihlr-22948	467	13	rules	rule	NOUN
ihlr-22948	467	14	for	for	ADP
ihlr-22948	467	15	its	its	PRON
ihlr-22948	467	16	operations	operation	NOUN
ihlr-22948	467	17	,	,	PUNCT
ihlr-22948	467	18	how	how	SCONJ
ihlr-22948	467	19	its	its	PRON
ihlr-22948	467	20	decision	decision	NOUN
ihlr-22948	467	21	-	-	PUNCT
ihlr-22948	467	22	making	making	NOUN
ihlr-22948	467	23	is	be	AUX
ihlr-22948	467	24	structured	structure	VERB
ihlr-22948	467	25	,	,	PUNCT
ihlr-22948	467	26	and	and	CCONJ
ihlr-22948	467	27	whether	whether	SCONJ
ihlr-22948	467	28	oversight	oversight	NOUN
ihlr-22948	467	29	mechanisms	mechanism	NOUN
ihlr-22948	467	30	are	be	AUX
ihlr-22948	467	31	in	in	ADP
ihlr-22948	467	32	place	place	NOUN
ihlr-22948	467	33	.	.	PUNCT
ihlr-22948	468	1	with	with	ADP
ihlr-22948	468	2	respect	respect	NOUN
ihlr-22948	468	3	to	to	ADP
ihlr-22948	468	4	registry	registry	NOUN
ihlr-22948	468	5	governance	governance	NOUN
ihlr-22948	468	6	,	,	PUNCT
ihlr-22948	468	7	the	the	DET
ihlr-22948	468	8	most	most	ADV
ihlr-22948	468	9	consistent	consistent	ADJ
ihlr-22948	468	10	100	100	NUM
ihlr-22948	468	11	.	.	PUNCT
ihlr-22948	468	12	list	list	NOUN
ihlr-22948	468	13	of	of	ADP
ihlr-22948	468	14	registries	registry	NOUN
ihlr-22948	468	15	,	,	PUNCT
ihlr-22948	468	16	supra	supra	PROPN
ihlr-22948	468	17	note	note	NOUN
ihlr-22948	468	18	3	3	NUM
ihlr-22948	468	19	.	.	NOUN
ihlr-22948	468	20	101	101	NUM
ihlr-22948	468	21	.	.	PUNCT
ihlr-22948	469	1	notes	note	NOUN
ihlr-22948	469	2	are	be	AUX
ihlr-22948	469	3	on	on	ADP
ihlr-22948	469	4	file	file	NOUN
ihlr-22948	469	5	with	with	ADP
ihlr-22948	469	6	the	the	DET
ihlr-22948	469	7	authors	author	NOUN
ihlr-22948	469	8	.	.	PUNCT
ihlr-22948	470	1	62	62	NUM
ihlr-22948	470	2	indiana	indiana	PROPN
ihlr-22948	470	3	health	health	PROPN
ihlr-22948	470	4	law	law	PROPN
ihlr-22948	470	5	review	review	NOUN
ihlr-22948	470	6	[	[	X
ihlr-22948	470	7	vol	vol	NOUN
ihlr-22948	470	8	.	.	PUNCT
ihlr-22948	471	1	16:43	16:43	NUM
ihlr-22948	471	2	finding	finding	NOUN
ihlr-22948	471	3	was	be	AUX
ihlr-22948	471	4	the	the	DET
ihlr-22948	471	5	great	great	ADJ
ihlr-22948	471	6	variety	variety	NOUN
ihlr-22948	471	7	that	that	PRON
ihlr-22948	471	8	exists	exist	VERB
ihlr-22948	471	9	.	.	PUNCT
ihlr-22948	472	1	of	of	ADP
ihlr-22948	472	2	the	the	DET
ihlr-22948	472	3	seventeen	seventeen	NUM
ihlr-22948	472	4	registries	registry	NOUN
ihlr-22948	472	5	interviewed	interview	VERB
ihlr-22948	472	6	,	,	PUNCT
ihlr-22948	472	7	fourteen	fourteen	NUM
ihlr-22948	472	8	had	have	VERB
ihlr-22948	472	9	official	official	ADJ
ihlr-22948	472	10	statements	statement	NOUN
ihlr-22948	472	11	of	of	ADP
ihlr-22948	472	12	the	the	DET
ihlr-22948	472	13	registry	registry	NOUN
ihlr-22948	472	14	mission	mission	NOUN
ihlr-22948	472	15	.	.	PUNCT
ihlr-22948	473	1	six	six	NUM
ihlr-22948	473	2	had	have	VERB
ihlr-22948	473	3	explicit	explicit	ADJ
ihlr-22948	473	4	bylaws	bylaw	NOUN
ihlr-22948	473	5	,	,	PUNCT
ihlr-22948	473	6	five	five	NUM
ihlr-22948	473	7	had	have	VERB
ihlr-22948	473	8	formal	formal	ADJ
ihlr-22948	473	9	statements	statement	NOUN
ihlr-22948	473	10	of	of	ADP
ihlr-22948	473	11	the	the	DET
ihlr-22948	473	12	makeup	makeup	NOUN
ihlr-22948	473	13	of	of	ADP
ihlr-22948	473	14	governance	governance	NOUN
ihlr-22948	473	15	committees	committee	NOUN
ihlr-22948	473	16	,	,	PUNCT
ihlr-22948	473	17	and	and	CCONJ
ihlr-22948	473	18	six	six	NUM
ihlr-22948	473	19	had	have	VERB
ihlr-22948	473	20	formal	formal	ADJ
ihlr-22948	473	21	statements	statement	NOUN
ihlr-22948	473	22	of	of	ADP
ihlr-22948	473	23	their	their	PRON
ihlr-22948	473	24	decision	decision	NOUN
ihlr-22948	473	25	-	-	PUNCT
ihlr-22948	473	26	making	make	VERB
ihlr-22948	473	27	structures	structure	NOUN
ihlr-22948	473	28	.	.	PUNCT
ihlr-22948	474	1	fifteen	fifteen	NUM
ihlr-22948	474	2	of	of	ADP
ihlr-22948	474	3	the	the	DET
ihlr-22948	474	4	seventeen	seventeen	NUM
ihlr-22948	474	5	had	have	VERB
ihlr-22948	474	6	a	a	DET
ihlr-22948	474	7	formal	formal	ADJ
ihlr-22948	474	8	management	management	NOUN
ihlr-22948	474	9	board	board	NOUN
ihlr-22948	474	10	;	;	PUNCT
ihlr-22948	474	11	nine	nine	NUM
ihlr-22948	474	12	had	have	VERB
ihlr-22948	474	13	advisory	advisory	ADJ
ihlr-22948	474	14	boards	board	NOUN
ihlr-22948	474	15	.	.	PUNCT
ihlr-22948	475	1	statements	statement	NOUN
ihlr-22948	475	2	of	of	ADP
ihlr-22948	475	3	the	the	DET
ihlr-22948	475	4	duties	duty	NOUN
ihlr-22948	475	5	of	of	ADP
ihlr-22948	475	6	these	these	DET
ihlr-22948	475	7	governance	governance	NOUN
ihlr-22948	475	8	structures	structure	NOUN
ihlr-22948	475	9	varied	vary	VERB
ihlr-22948	475	10	widely	widely	ADV
ihlr-22948	475	11	as	as	ADV
ihlr-22948	475	12	well	well	ADV
ihlr-22948	475	13	.	.	PUNCT
ihlr-22948	476	1	one	one	NUM
ihlr-22948	476	2	registry	registry	NOUN
ihlr-22948	476	3	specifically	specifically	ADV
ihlr-22948	476	4	assigned	assign	VERB
ihlr-22948	476	5	fiscal	fiscal	ADJ
ihlr-22948	476	6	responsibility	responsibility	NOUN
ihlr-22948	476	7	to	to	ADP
ihlr-22948	476	8	the	the	DET
ihlr-22948	476	9	management	management	NOUN
ihlr-22948	476	10	board	board	NOUN
ihlr-22948	476	11	,	,	PUNCT
ihlr-22948	476	12	two	two	NUM
ihlr-22948	476	13	used	use	VERB
ihlr-22948	476	14	the	the	DET
ihlr-22948	476	15	board	board	NOUN
ihlr-22948	476	16	to	to	PART
ihlr-22948	476	17	advise	advise	VERB
ihlr-22948	476	18	on	on	ADP
ihlr-22948	476	19	its	its	PRON
ihlr-22948	476	20	strategic	strategic	ADJ
ihlr-22948	476	21	direction	direction	NOUN
ihlr-22948	476	22	,	,	PUNCT
ihlr-22948	476	23	and	and	CCONJ
ihlr-22948	476	24	two	two	NUM
ihlr-22948	476	25	used	use	VERB
ihlr-22948	476	26	the	the	DET
ihlr-22948	476	27	board	board	NOUN
ihlr-22948	476	28	to	to	PART
ihlr-22948	476	29	review	review	VERB
ihlr-22948	476	30	scientific	scientific	ADJ
ihlr-22948	476	31	reports	report	NOUN
ihlr-22948	476	32	and	and	CCONJ
ihlr-22948	476	33	publications	publication	NOUN
ihlr-22948	476	34	from	from	ADP
ihlr-22948	476	35	the	the	DET
ihlr-22948	476	36	registry	registry	NOUN
ihlr-22948	476	37	.	.	PUNCT
ihlr-22948	477	1	for	for	ADP
ihlr-22948	477	2	two	two	NUM
ihlr-22948	477	3	registries	registry	NOUN
ihlr-22948	477	4	,	,	PUNCT
ihlr-22948	477	5	the	the	DET
ihlr-22948	477	6	board	board	NOUN
ihlr-22948	477	7	developed	develop	VERB
ihlr-22948	477	8	and	and	CCONJ
ihlr-22948	477	9	monitored	monitor	VERB
ihlr-22948	477	10	data	datum	NOUN
ihlr-22948	477	11	practices	practice	NOUN
ihlr-22948	477	12	,	,	PUNCT
ihlr-22948	477	13	for	for	ADP
ihlr-22948	477	14	another	another	DET
ihlr-22948	477	15	two	two	NUM
ihlr-22948	477	16	the	the	DET
ihlr-22948	477	17	board	board	NOUN
ihlr-22948	477	18	created	create	VERB
ihlr-22948	477	19	strategies	strategy	NOUN
ihlr-22948	477	20	for	for	ADP
ihlr-22948	477	21	communication	communication	NOUN
ihlr-22948	477	22	of	of	ADP
ihlr-22948	477	23	registry	registry	NOUN
ihlr-22948	477	24	activities	activity	NOUN
ihlr-22948	477	25	,	,	PUNCT
ihlr-22948	477	26	and	and	CCONJ
ihlr-22948	477	27	for	for	ADP
ihlr-22948	477	28	six	six	NUM
ihlr-22948	477	29	the	the	DET
ihlr-22948	477	30	explicit	explicit	ADJ
ihlr-22948	477	31	role	role	NOUN
ihlr-22948	477	32	of	of	ADP
ihlr-22948	477	33	the	the	DET
ihlr-22948	477	34	board	board	NOUN
ihlr-22948	477	35	was	be	AUX
ihlr-22948	477	36	to	to	PART
ihlr-22948	477	37	consider	consider	VERB
ihlr-22948	477	38	the	the	DET
ihlr-22948	477	39	needs	need	NOUN
ihlr-22948	477	40	of	of	ADP
ihlr-22948	477	41	all	all	DET
ihlr-22948	477	42	registry	registry	NOUN
ihlr-22948	477	43	stakeholders	stakeholder	NOUN
ihlr-22948	477	44	.	.	PUNCT
ihlr-22948	478	1	very	very	ADV
ihlr-22948	478	2	few	few	ADJ
ihlr-22948	478	3	of	of	ADP
ihlr-22948	478	4	the	the	DET
ihlr-22948	478	5	registries	registry	NOUN
ihlr-22948	478	6	interviewed	interview	VERB
ihlr-22948	478	7	had	have	VERB
ihlr-22948	478	8	formal	formal	ADJ
ihlr-22948	478	9	or	or	CCONJ
ihlr-22948	478	10	independent	independent	ADJ
ihlr-22948	478	11	oversight	oversight	NOUN
ihlr-22948	478	12	mechanisms	mechanism	NOUN
ihlr-22948	478	13	.	.	PUNCT
ihlr-22948	479	1	only	only	ADV
ihlr-22948	479	2	two	two	NUM
ihlr-22948	479	3	of	of	ADP
ihlr-22948	479	4	the	the	DET
ihlr-22948	479	5	seventeen	seventeen	NUM
ihlr-22948	479	6	had	have	VERB
ihlr-22948	479	7	an	an	DET
ihlr-22948	479	8	independent	independent	ADJ
ihlr-22948	479	9	oversight	oversight	NOUN
ihlr-22948	479	10	mechanism	mechanism	NOUN
ihlr-22948	479	11	.	.	PUNCT
ihlr-22948	480	1	six	six	NUM
ihlr-22948	480	2	had	have	VERB
ihlr-22948	480	3	internal	internal	ADJ
ihlr-22948	480	4	oversight	oversight	NOUN
ihlr-22948	480	5	mechanisms	mechanism	NOUN
ihlr-22948	480	6	,	,	PUNCT
ihlr-22948	480	7	primarily	primarily	ADV
ihlr-22948	480	8	composed	compose	VERB
ihlr-22948	480	9	of	of	ADP
ihlr-22948	480	10	physicians	physician	NOUN
ihlr-22948	480	11	.	.	PUNCT
ihlr-22948	481	1	one	one	NUM
ihlr-22948	481	2	identified	identify	VERB
ihlr-22948	481	3	an	an	DET
ihlr-22948	481	4	ethicist	ethicist	NOUN
ihlr-22948	481	5	as	as	ADP
ihlr-22948	481	6	a	a	DET
ihlr-22948	481	7	member	member	NOUN
ihlr-22948	481	8	of	of	ADP
ihlr-22948	481	9	its	its	PRON
ihlr-22948	481	10	oversight	oversight	NOUN
ihlr-22948	481	11	mechanism	mechanism	NOUN
ihlr-22948	481	12	and	and	CCONJ
ihlr-22948	481	13	two	two	NUM
ihlr-22948	481	14	identified	identify	VERB
ihlr-22948	481	15	statisticians	statistician	NOUN
ihlr-22948	481	16	.	.	PUNCT
ihlr-22948	482	1	although	although	SCONJ
ihlr-22948	482	2	these	these	DET
ihlr-22948	482	3	data	datum	NOUN
ihlr-22948	482	4	are	be	AUX
ihlr-22948	482	5	perforce	perforce	NOUN
ihlr-22948	482	6	limited	limit	VERB
ihlr-22948	482	7	to	to	ADP
ihlr-22948	482	8	the	the	DET
ihlr-22948	482	9	registries	registry	NOUN
ihlr-22948	482	10	interviewed	interview	VERB
ihlr-22948	482	11	,	,	PUNCT
ihlr-22948	482	12	the	the	DET
ihlr-22948	482	13	extent	extent	NOUN
ihlr-22948	482	14	to	to	PART
ihlr-22948	482	15	which	which	PRON
ihlr-22948	482	16	registries	registry	NOUN
ihlr-22948	482	17	lack	lack	VERB
ihlr-22948	482	18	formal	formal	ADJ
ihlr-22948	482	19	governance	governance	NOUN
ihlr-22948	482	20	and	and	CCONJ
ihlr-22948	482	21	accountability	accountability	NOUN
ihlr-22948	482	22	structures	structure	NOUN
ihlr-22948	482	23	clearly	clearly	ADV
ihlr-22948	482	24	warrants	warrant	VERB
ihlr-22948	482	25	further	further	ADJ
ihlr-22948	482	26	study	study	NOUN
ihlr-22948	482	27	.	.	PUNCT
ihlr-22948	483	1	registries	registry	NOUN
ihlr-22948	483	2	may	may	AUX
ihlr-22948	483	3	find	find	VERB
ihlr-22948	483	4	that	that	SCONJ
ihlr-22948	483	5	their	their	PRON
ihlr-22948	483	6	success	success	NOUN
ihlr-22948	483	7	in	in	ADP
ihlr-22948	483	8	enrolling	enrol	VERB
ihlr-22948	483	9	patients	patient	NOUN
ihlr-22948	483	10	and	and	CCONJ
ihlr-22948	483	11	in	in	ADP
ihlr-22948	483	12	generating	generate	VERB
ihlr-22948	483	13	patient	patient	NOUN
ihlr-22948	483	14	trust	trust	NOUN
ihlr-22948	483	15	is	be	AUX
ihlr-22948	483	16	enhanced	enhance	VERB
ihlr-22948	483	17	by	by	ADP
ihlr-22948	483	18	more	more	ADV
ihlr-22948	483	19	robust	robust	ADJ
ihlr-22948	483	20	and	and	CCONJ
ihlr-22948	483	21	transparent	transparent	ADJ
ihlr-22948	483	22	governance	governance	NOUN
ihlr-22948	483	23	structures	structure	NOUN
ihlr-22948	483	24	.	.	PUNCT
ihlr-22948	484	1	2	2	X
ihlr-22948	484	2	.	.	X
ihlr-22948	484	3	registry	registry	NOUN
ihlr-22948	484	4	funding	funding	NOUN
ihlr-22948	484	5	of	of	ADP
ihlr-22948	484	6	the	the	DET
ihlr-22948	484	7	registries	registry	NOUN
ihlr-22948	484	8	that	that	PRON
ihlr-22948	484	9	agreed	agree	VERB
ihlr-22948	484	10	to	to	PART
ihlr-22948	484	11	be	be	AUX
ihlr-22948	484	12	interviewed	interview	VERB
ihlr-22948	484	13	for	for	ADP
ihlr-22948	484	14	this	this	DET
ihlr-22948	484	15	study	study	NOUN
ihlr-22948	484	16	,	,	PUNCT
ihlr-22948	484	17	the	the	DET
ihlr-22948	484	18	predominant	predominant	ADJ
ihlr-22948	484	19	funding	funding	NOUN
ihlr-22948	484	20	source	source	NOUN
ihlr-22948	484	21	was	be	AUX
ihlr-22948	484	22	nih	nih	PROPN
ihlr-22948	484	23	.	.	PROPN
ihlr-22948	485	1	several	several	ADJ
ihlr-22948	485	2	received	receive	VERB
ihlr-22948	485	3	ongoing	ongoing	ADJ
ihlr-22948	485	4	support	support	NOUN
ihlr-22948	485	5	from	from	ADP
ihlr-22948	485	6	academic	academic	ADJ
ihlr-22948	485	7	medical	medical	ADJ
ihlr-22948	485	8	centers	center	NOUN
ihlr-22948	485	9	after	after	ADP
ihlr-22948	485	10	the	the	DET
ihlr-22948	485	11	expiration	expiration	NOUN
ihlr-22948	485	12	of	of	ADP
ihlr-22948	485	13	the	the	DET
ihlr-22948	485	14	initial	initial	ADJ
ihlr-22948	485	15	grant	grant	NOUN
ihlr-22948	485	16	.	.	PUNCT
ihlr-22948	486	1	one	one	NUM
ihlr-22948	486	2	registry	registry	NOUN
ihlr-22948	486	3	functioned	function	VERB
ihlr-22948	486	4	largely	largely	ADV
ihlr-22948	486	5	on	on	ADP
ihlr-22948	486	6	the	the	DET
ihlr-22948	486	7	basis	basis	NOUN
ihlr-22948	486	8	of	of	ADP
ihlr-22948	486	9	a	a	DET
ihlr-22948	486	10	grant	grant	NOUN
ihlr-22948	486	11	from	from	ADP
ihlr-22948	486	12	a	a	DET
ihlr-22948	486	13	single	single	ADJ
ihlr-22948	486	14	private	private	ADJ
ihlr-22948	486	15	donor	donor	NOUN
ihlr-22948	486	16	.	.	PUNCT
ihlr-22948	487	1	several	several	ADJ
ihlr-22948	487	2	received	receive	VERB
ihlr-22948	487	3	at	at	ADP
ihlr-22948	487	4	least	least	ADJ
ihlr-22948	487	5	some	some	PRON
ihlr-22948	487	6	funding	funding	NOUN
ihlr-22948	487	7	or	or	CCONJ
ihlr-22948	487	8	support	support	NOUN
ihlr-22948	487	9	from	from	ADP
ihlr-22948	487	10	industry	industry	NOUN
ihlr-22948	487	11	.	.	PUNCT
ihlr-22948	488	1	several	several	ADJ
ihlr-22948	488	2	engaged	engage	VERB
ihlr-22948	488	3	in	in	ADP
ihlr-22948	488	4	significant	significant	ADJ
ihlr-22948	488	5	fundraising	fundraising	NOUN
ihlr-22948	488	6	efforts	effort	NOUN
ihlr-22948	488	7	to	to	PART
ihlr-22948	488	8	support	support	VERB
ihlr-22948	488	9	their	their	PRON
ihlr-22948	488	10	activities	activity	NOUN
ihlr-22948	488	11	.	.	PUNCT
ihlr-22948	489	1	the	the	DET
ihlr-22948	489	2	interviews	interview	NOUN
ihlr-22948	489	3	did	do	AUX
ihlr-22948	489	4	not	not	PART
ihlr-22948	489	5	yield	yield	VERB
ihlr-22948	489	6	sufficient	sufficient	ADJ
ihlr-22948	489	7	information	information	NOUN
ihlr-22948	489	8	for	for	ADP
ihlr-22948	489	9	analysis	analysis	NOUN
ihlr-22948	489	10	about	about	ADP
ihlr-22948	489	11	the	the	DET
ihlr-22948	489	12	extent	extent	NOUN
ihlr-22948	489	13	to	to	PART
ihlr-22948	489	14	which	which	PRON
ihlr-22948	489	15	funding	funding	NOUN
ihlr-22948	489	16	structures	structure	NOUN
ihlr-22948	489	17	drove	drive	VERB
ihlr-22948	489	18	decisions	decision	NOUN
ihlr-22948	489	19	about	about	ADP
ihlr-22948	489	20	data	datum	NOUN
ihlr-22948	489	21	acquisition	acquisition	NOUN
ihlr-22948	489	22	,	,	PUNCT
ihlr-22948	489	23	uses	use	NOUN
ihlr-22948	489	24	,	,	PUNCT
ihlr-22948	489	25	and	and	CCONJ
ihlr-22948	489	26	protections	protection	NOUN
ihlr-22948	489	27	,	,	PUNCT
ihlr-22948	489	28	although	although	SCONJ
ihlr-22948	489	29	this	this	PRON
ihlr-22948	489	30	is	be	AUX
ihlr-22948	489	31	an	an	DET
ihlr-22948	489	32	area	area	NOUN
ihlr-22948	489	33	that	that	PRON
ihlr-22948	489	34	clearly	clearly	ADV
ihlr-22948	489	35	warrants	warrant	VERB
ihlr-22948	489	36	more	more	ADJ
ihlr-22948	489	37	systematic	systematic	ADJ
ihlr-22948	489	38	investigation	investigation	NOUN
ihlr-22948	489	39	.	.	PUNCT
ihlr-22948	490	1	3	3	X
ihlr-22948	490	2	.	.	X
ihlr-22948	490	3	registry	registry	NOUN
ihlr-22948	490	4	populations	population	NOUN
ihlr-22948	490	5	:	:	PUNCT
ihlr-22948	490	6	enrollment	enrollment	NOUN
ihlr-22948	490	7	,	,	PUNCT
ihlr-22948	490	8	information	information	NOUN
ihlr-22948	490	9	,	,	PUNCT
ihlr-22948	490	10	and	and	CCONJ
ihlr-22948	490	11	consent	consent	VERB
ihlr-22948	490	12	to	to	PART
ihlr-22948	490	13	participate	participate	VERB
ihlr-22948	490	14	interviewees	interviewee	NOUN
ihlr-22948	490	15	cited	cite	VERB
ihlr-22948	490	16	many	many	ADJ
ihlr-22948	490	17	factors	factor	NOUN
ihlr-22948	490	18	as	as	ADP
ihlr-22948	490	19	affecting	affect	VERB
ihlr-22948	490	20	registry	registry	NOUN
ihlr-22948	490	21	size	size	NOUN
ihlr-22948	490	22	.	.	PUNCT
ihlr-22948	491	1	the	the	DET
ihlr-22948	491	2	type	type	NOUN
ihlr-22948	491	3	of	of	ADP
ihlr-22948	491	4	the	the	DET
ihlr-22948	491	5	disease	disease	NOUN
ihlr-22948	491	6	and	and	CCONJ
ihlr-22948	491	7	the	the	DET
ihlr-22948	491	8	frequency	frequency	NOUN
ihlr-22948	491	9	with	with	ADP
ihlr-22948	491	10	which	which	PRON
ihlr-22948	491	11	it	it	PRON
ihlr-22948	491	12	occurs	occur	VERB
ihlr-22948	491	13	in	in	ADP
ihlr-22948	491	14	the	the	DET
ihlr-22948	491	15	target	target	NOUN
ihlr-22948	491	16	population	population	NOUN
ihlr-22948	491	17	clearly	clearly	ADV
ihlr-22948	491	18	constrains	constrain	VERB
ihlr-22948	491	19	a	a	DET
ihlr-22948	491	20	registry	registry	NOUN
ihlr-22948	491	21	’s	’s	PART
ihlr-22948	491	22	potential	potential	ADJ
ihlr-22948	491	23	population	population	NOUN
ihlr-22948	491	24	size	size	NOUN
ihlr-22948	491	25	.	.	PUNCT
ihlr-22948	492	1	the	the	DET
ihlr-22948	492	2	method	method	NOUN
ihlr-22948	492	3	of	of	ADP
ihlr-22948	492	4	acquiring	acquire	VERB
ihlr-22948	492	5	registry	registry	NOUN
ihlr-22948	492	6	participants	participant	NOUN
ihlr-22948	492	7	also	also	ADV
ihlr-22948	492	8	has	have	VERB
ihlr-22948	492	9	an	an	DET
ihlr-22948	492	10	impact	impact	NOUN
ihlr-22948	492	11	on	on	ADP
ihlr-22948	492	12	the	the	DET
ihlr-22948	492	13	number	number	NOUN
ihlr-22948	492	14	of	of	ADP
ihlr-22948	492	15	participants	participant	NOUN
ihlr-22948	492	16	.	.	PUNCT
ihlr-22948	493	1	most	most	ADJ
ihlr-22948	493	2	registries	registry	NOUN
ihlr-22948	493	3	in	in	ADP
ihlr-22948	493	4	this	this	DET
ihlr-22948	493	5	study	study	NOUN
ihlr-22948	493	6	used	use	VERB
ihlr-22948	493	7	similar	similar	ADJ
ihlr-22948	493	8	methods	method	NOUN
ihlr-22948	493	9	of	of	ADP
ihlr-22948	493	10	identifying	identify	VERB
ihlr-22948	493	11	potential	potential	ADJ
ihlr-22948	493	12	participants	participant	NOUN
ihlr-22948	493	13	,	,	PUNCT
ihlr-22948	493	14	including	include	VERB
ihlr-22948	493	15	:	:	PUNCT
ihlr-22948	493	16	(	(	PUNCT
ihlr-22948	493	17	1	1	X
ihlr-22948	493	18	)	)	PUNCT
ihlr-22948	493	19	participating	participate	VERB
ihlr-22948	493	20	private	private	ADJ
ihlr-22948	493	21	clinics	clinic	NOUN
ihlr-22948	493	22	and	and	CCONJ
ihlr-22948	493	23	physicians	physician	NOUN
ihlr-22948	493	24	;	;	PUNCT
ihlr-22948	493	25	(	(	PUNCT
ihlr-22948	493	26	2	2	X
ihlr-22948	493	27	)	)	PUNCT
ihlr-22948	493	28	partnerships	partnership	NOUN
ihlr-22948	493	29	with	with	ADP
ihlr-22948	493	30	universities	university	NOUN
ihlr-22948	493	31	with	with	ADP
ihlr-22948	493	32	medical	medical	ADJ
ihlr-22948	493	33	centers	center	NOUN
ihlr-22948	493	34	;	;	PUNCT
ihlr-22948	493	35	and	and	CCONJ
ihlr-22948	493	36	(	(	PUNCT
ihlr-22948	493	37	3	3	X
ihlr-22948	493	38	)	)	PUNCT
ihlr-22948	493	39	website	website	NOUN
ihlr-22948	493	40	marketing	marketing	NOUN
ihlr-22948	493	41	by	by	ADP
ihlr-22948	493	42	the	the	DET
ihlr-22948	493	43	registry	registry	NOUN
ihlr-22948	493	44	itself	itself	PRON
ihlr-22948	493	45	.	.	PUNCT
ihlr-22948	494	1	most	most	ADJ
ihlr-22948	494	2	registries	registry	NOUN
ihlr-22948	494	3	identify	identify	VERB
ihlr-22948	494	4	potential	potential	ADJ
ihlr-22948	494	5	registry	registry	NOUN
ihlr-22948	494	6	participants	participant	NOUN
ihlr-22948	494	7	through	through	ADP
ihlr-22948	494	8	participating	participate	VERB
ihlr-22948	494	9	clinics	clinic	NOUN
ihlr-22948	494	10	and	and	CCONJ
ihlr-22948	494	11	clinicians	clinician	NOUN
ihlr-22948	494	12	themselves	themselves	PRON
ihlr-22948	494	13	.	.	PUNCT
ihlr-22948	495	1	these	these	PRON
ihlr-22948	495	2	are	be	AUX
ihlr-22948	495	3	sometimes	sometimes	ADV
ihlr-22948	495	4	connected	connect	VERB
ihlr-22948	495	5	to	to	ADP
ihlr-22948	495	6	private	private	ADJ
ihlr-22948	495	7	clinics	clinic	NOUN
ihlr-22948	495	8	,	,	PUNCT
ihlr-22948	495	9	but	but	CCONJ
ihlr-22948	495	10	a	a	DET
ihlr-22948	495	11	partnership	partnership	NOUN
ihlr-22948	495	12	with	with	ADP
ihlr-22948	495	13	university	university	NOUN
ihlr-22948	495	14	medical	medical	ADJ
ihlr-22948	495	15	centers	center	NOUN
ihlr-22948	495	16	is	be	AUX
ihlr-22948	495	17	very	very	ADV
ihlr-22948	495	18	common	common	ADJ
ihlr-22948	495	19	.	.	PUNCT
ihlr-22948	496	1	2018	2018	NUM
ihlr-22948	496	2	]	]	PUNCT
ihlr-22948	496	3	patient	patient	ADJ
ihlr-22948	496	4	registries	registry	NOUN
ihlr-22948	496	5	and	and	CCONJ
ihlr-22948	496	6	their	their	PRON
ihlr-22948	496	7	governance	governance	NOUN
ihlr-22948	496	8	63	63	NUM
ihlr-22948	496	9	registries	registry	NOUN
ihlr-22948	496	10	also	also	ADV
ihlr-22948	496	11	invest	invest	VERB
ihlr-22948	496	12	in	in	ADP
ihlr-22948	496	13	their	their	PRON
ihlr-22948	496	14	own	own	ADJ
ihlr-22948	496	15	advertising	advertising	NOUN
ihlr-22948	496	16	to	to	PART
ihlr-22948	496	17	reach	reach	VERB
ihlr-22948	496	18	individuals	individual	NOUN
ihlr-22948	496	19	themselves	themselves	PRON
ihlr-22948	496	20	,	,	PUNCT
ihlr-22948	496	21	often	often	ADV
ihlr-22948	496	22	by	by	ADP
ihlr-22948	496	23	hosting	host	VERB
ihlr-22948	496	24	a	a	DET
ihlr-22948	496	25	website	website	NOUN
ihlr-22948	496	26	and	and	CCONJ
ihlr-22948	496	27	advertising	advertising	NOUN
ihlr-22948	496	28	directly	directly	ADV
ihlr-22948	496	29	to	to	ADP
ihlr-22948	496	30	potential	potential	ADJ
ihlr-22948	496	31	registry	registry	NOUN
ihlr-22948	496	32	participants	participant	NOUN
ihlr-22948	496	33	.	.	PUNCT
ihlr-22948	497	1	less	less	ADV
ihlr-22948	497	2	common	common	ADJ
ihlr-22948	497	3	still	still	ADV
ihlr-22948	497	4	are	be	AUX
ihlr-22948	497	5	registries	registry	NOUN
ihlr-22948	497	6	that	that	PRON
ihlr-22948	497	7	advertise	advertise	VERB
ihlr-22948	497	8	directly	directly	ADV
ihlr-22948	497	9	to	to	ADP
ihlr-22948	497	10	potential	potential	ADJ
ihlr-22948	497	11	registry	registry	NOUN
ihlr-22948	497	12	participants	participant	NOUN
ihlr-22948	497	13	by	by	ADP
ihlr-22948	497	14	way	way	NOUN
ihlr-22948	497	15	of	of	ADP
ihlr-22948	497	16	publication	publication	NOUN
ihlr-22948	497	17	or	or	CCONJ
ihlr-22948	497	18	brochure	brochure	NOUN
ihlr-22948	497	19	placed	place	VERB
ihlr-22948	497	20	at	at	ADP
ihlr-22948	497	21	a	a	DET
ihlr-22948	497	22	doctor	doctor	NOUN
ihlr-22948	497	23	’s	’s	PART
ihlr-22948	497	24	office	office	NOUN
ihlr-22948	497	25	.	.	PUNCT
ihlr-22948	498	1	all	all	DET
ihlr-22948	498	2	interviewed	interview	VERB
ihlr-22948	498	3	registries	registry	NOUN
ihlr-22948	498	4	required	require	VERB
ihlr-22948	498	5	some	some	DET
ihlr-22948	498	6	form	form	NOUN
ihlr-22948	498	7	of	of	ADP
ihlr-22948	498	8	consent	consent	NOUN
ihlr-22948	498	9	to	to	PART
ihlr-22948	498	10	initiate	initiate	VERB
ihlr-22948	498	11	participation	participation	NOUN
ihlr-22948	498	12	in	in	ADP
ihlr-22948	498	13	the	the	DET
ihlr-22948	498	14	registry	registry	NOUN
ihlr-22948	498	15	.	.	PUNCT
ihlr-22948	499	1	for	for	ADP
ihlr-22948	499	2	a	a	DET
ihlr-22948	499	3	majority	majority	NOUN
ihlr-22948	499	4	of	of	ADP
ihlr-22948	499	5	registry	registry	NOUN
ihlr-22948	499	6	participants	participant	NOUN
ihlr-22948	499	7	who	who	PRON
ihlr-22948	499	8	are	be	AUX
ihlr-22948	499	9	referred	refer	VERB
ihlr-22948	499	10	to	to	ADP
ihlr-22948	499	11	a	a	DET
ihlr-22948	499	12	registry	registry	NOUN
ihlr-22948	499	13	by	by	ADP
ihlr-22948	499	14	a	a	DET
ihlr-22948	499	15	participating	participate	VERB
ihlr-22948	499	16	clinician	clinician	NOUN
ihlr-22948	499	17	or	or	CCONJ
ihlr-22948	499	18	clinic	clinic	NOUN
ihlr-22948	499	19	,	,	PUNCT
ihlr-22948	499	20	the	the	DET
ihlr-22948	499	21	process	process	NOUN
ihlr-22948	499	22	of	of	ADP
ihlr-22948	499	23	enrollment	enrollment	NOUN
ihlr-22948	499	24	and	and	CCONJ
ihlr-22948	499	25	consent	consent	NOUN
ihlr-22948	499	26	typically	typically	ADV
ihlr-22948	499	27	occurs	occur	VERB
ihlr-22948	499	28	within	within	ADP
ihlr-22948	499	29	the	the	DET
ihlr-22948	499	30	treatment	treatment	NOUN
ihlr-22948	499	31	context	context	NOUN
ihlr-22948	499	32	.	.	PUNCT
ihlr-22948	500	1	the	the	DET
ihlr-22948	500	2	likely	likely	ADJ
ihlr-22948	500	3	process	process	NOUN
ihlr-22948	500	4	is	be	AUX
ihlr-22948	500	5	that	that	SCONJ
ihlr-22948	500	6	these	these	DET
ihlr-22948	500	7	potential	potential	ADJ
ihlr-22948	500	8	participants	participant	NOUN
ihlr-22948	500	9	will	will	AUX
ihlr-22948	500	10	be	be	AUX
ihlr-22948	500	11	approached	approach	VERB
ihlr-22948	500	12	by	by	ADP
ihlr-22948	500	13	their	their	PRON
ihlr-22948	500	14	clinician	clinician	NOUN
ihlr-22948	500	15	after	after	ADP
ihlr-22948	500	16	a	a	DET
ihlr-22948	500	17	diagnosis	diagnosis	NOUN
ihlr-22948	500	18	of	of	ADP
ihlr-22948	500	19	a	a	DET
ihlr-22948	500	20	condition	condition	NOUN
ihlr-22948	500	21	of	of	ADP
ihlr-22948	500	22	interest	interest	NOUN
ihlr-22948	500	23	to	to	ADP
ihlr-22948	500	24	the	the	DET
ihlr-22948	500	25	registry	registry	NOUN
ihlr-22948	500	26	.	.	PUNCT
ihlr-22948	501	1	for	for	ADP
ihlr-22948	501	2	these	these	DET
ihlr-22948	501	3	patients	patient	NOUN
ihlr-22948	501	4	,	,	PUNCT
ihlr-22948	501	5	the	the	DET
ihlr-22948	501	6	consent	consent	NOUN
ihlr-22948	501	7	process	process	NOUN
ihlr-22948	501	8	will	will	AUX
ihlr-22948	501	9	take	take	VERB
ihlr-22948	501	10	place	place	NOUN
ihlr-22948	501	11	with	with	ADP
ihlr-22948	501	12	their	their	PRON
ihlr-22948	501	13	physician	physician	NOUN
ihlr-22948	501	14	and	and	CCONJ
ihlr-22948	501	15	may	may	AUX
ihlr-22948	501	16	also	also	ADV
ihlr-22948	501	17	involve	involve	VERB
ihlr-22948	501	18	creating	create	VERB
ihlr-22948	501	19	an	an	DET
ihlr-22948	501	20	online	online	ADJ
ihlr-22948	501	21	profile	profile	NOUN
ihlr-22948	501	22	for	for	ADP
ihlr-22948	501	23	contact	contact	NOUN
ihlr-22948	501	24	and	and	CCONJ
ihlr-22948	501	25	further	further	ADJ
ihlr-22948	501	26	consent	consent	NOUN
ihlr-22948	501	27	to	to	ADP
ihlr-22948	501	28	inclusion	inclusion	NOUN
ihlr-22948	501	29	in	in	ADP
ihlr-22948	501	30	future	future	ADJ
ihlr-22948	501	31	studies	study	NOUN
ihlr-22948	501	32	.	.	PUNCT
ihlr-22948	502	1	the	the	DET
ihlr-22948	502	2	identity	identity	NOUN
ihlr-22948	502	3	of	of	ADP
ihlr-22948	502	4	registry	registry	NOUN
ihlr-22948	502	5	participants	participant	NOUN
ihlr-22948	502	6	is	be	AUX
ihlr-22948	502	7	assured	assure	VERB
ihlr-22948	502	8	through	through	ADP
ihlr-22948	502	9	their	their	PRON
ihlr-22948	502	10	clinicians	clinician	NOUN
ihlr-22948	502	11	’	'	PUNCT
ihlr-22948	502	12	participation	participation	NOUN
ihlr-22948	502	13	in	in	ADP
ihlr-22948	502	14	the	the	DET
ihlr-22948	502	15	enrollment	enrollment	NOUN
ihlr-22948	502	16	process	process	NOUN
ihlr-22948	502	17	.	.	PUNCT
ihlr-22948	503	1	registries	registry	NOUN
ihlr-22948	503	2	that	that	PRON
ihlr-22948	503	3	recruit	recruit	VERB
ihlr-22948	503	4	through	through	ADP
ihlr-22948	503	5	direct	direct	ADJ
ihlr-22948	503	6	advertising	advertising	NOUN
ihlr-22948	503	7	typically	typically	ADV
ihlr-22948	503	8	request	request	VERB
ihlr-22948	503	9	the	the	DET
ihlr-22948	503	10	registry	registry	NOUN
ihlr-22948	503	11	participant	participant	NOUN
ihlr-22948	503	12	to	to	PART
ihlr-22948	503	13	provide	provide	VERB
ihlr-22948	503	14	the	the	DET
ihlr-22948	503	15	registry	registry	NOUN
ihlr-22948	503	16	with	with	ADP
ihlr-22948	503	17	personal	personal	ADJ
ihlr-22948	503	18	health	health	NOUN
ihlr-22948	503	19	information	information	NOUN
ihlr-22948	503	20	.	.	PUNCT
ihlr-22948	504	1	creating	create	VERB
ihlr-22948	504	2	an	an	DET
ihlr-22948	504	3	online	online	ADJ
ihlr-22948	504	4	account	account	NOUN
ihlr-22948	504	5	and	and	CCONJ
ihlr-22948	504	6	uploading	upload	VERB
ihlr-22948	504	7	medical	medical	ADJ
ihlr-22948	504	8	reports	report	NOUN
ihlr-22948	504	9	and	and	CCONJ
ihlr-22948	504	10	other	other	ADJ
ihlr-22948	504	11	information	information	NOUN
ihlr-22948	504	12	to	to	ADP
ihlr-22948	504	13	the	the	DET
ihlr-22948	504	14	registry	registry	NOUN
ihlr-22948	504	15	is	be	AUX
ihlr-22948	504	16	the	the	DET
ihlr-22948	504	17	most	most	ADV
ihlr-22948	504	18	usual	usual	ADJ
ihlr-22948	504	19	method	method	NOUN
ihlr-22948	504	20	.	.	PUNCT
ihlr-22948	505	1	typically	typically	ADV
ihlr-22948	505	2	included	include	VERB
ihlr-22948	505	3	in	in	ADP
ihlr-22948	505	4	that	that	DET
ihlr-22948	505	5	process	process	NOUN
ihlr-22948	505	6	are	be	AUX
ihlr-22948	505	7	online	online	ADJ
ihlr-22948	505	8	registration	registration	NOUN
ihlr-22948	505	9	consent	consent	NOUN
ihlr-22948	505	10	forms	form	NOUN
ihlr-22948	505	11	.	.	PUNCT
ihlr-22948	506	1	this	this	DET
ihlr-22948	506	2	process	process	NOUN
ihlr-22948	506	3	of	of	ADP
ihlr-22948	506	4	enrollment	enrollment	NOUN
ihlr-22948	506	5	may	may	AUX
ihlr-22948	506	6	take	take	VERB
ihlr-22948	506	7	place	place	NOUN
ihlr-22948	506	8	without	without	ADP
ihlr-22948	506	9	the	the	DET
ihlr-22948	506	10	same	same	ADJ
ihlr-22948	506	11	kind	kind	NOUN
ihlr-22948	506	12	of	of	ADP
ihlr-22948	506	13	opportunity	opportunity	NOUN
ihlr-22948	506	14	to	to	PART
ihlr-22948	506	15	ask	ask	VERB
ihlr-22948	506	16	questions	question	NOUN
ihlr-22948	506	17	that	that	PRON
ihlr-22948	506	18	might	might	AUX
ihlr-22948	506	19	occur	occur	VERB
ihlr-22948	506	20	for	for	ADP
ihlr-22948	506	21	patients	patient	NOUN
ihlr-22948	506	22	enrolled	enrol	VERB
ihlr-22948	506	23	through	through	ADP
ihlr-22948	506	24	the	the	DET
ihlr-22948	506	25	provider	provider	NOUN
ihlr-22948	506	26	from	from	ADP
ihlr-22948	506	27	whom	whom	PRON
ihlr-22948	506	28	they	they	PRON
ihlr-22948	506	29	are	be	AUX
ihlr-22948	506	30	obtaining	obtain	VERB
ihlr-22948	506	31	treatment	treatment	NOUN
ihlr-22948	506	32	.	.	PUNCT
ihlr-22948	507	1	it	it	PRON
ihlr-22948	507	2	is	be	AUX
ihlr-22948	507	3	also	also	ADV
ihlr-22948	507	4	unlikely	unlikely	ADJ
ihlr-22948	507	5	to	to	PART
ihlr-22948	507	6	involve	involve	VERB
ihlr-22948	507	7	a	a	DET
ihlr-22948	507	8	reliable	reliable	ADJ
ihlr-22948	507	9	method	method	NOUN
ihlr-22948	507	10	for	for	ADP
ihlr-22948	507	11	assuring	assure	VERB
ihlr-22948	507	12	the	the	DET
ihlr-22948	507	13	identity	identity	NOUN
ihlr-22948	507	14	of	of	ADP
ihlr-22948	507	15	the	the	DET
ihlr-22948	507	16	registry	registry	NOUN
ihlr-22948	507	17	participant	participant	PROPN
ihlr-22948	507	18	.	.	PUNCT
ihlr-22948	508	1	registries	registry	NOUN
ihlr-22948	508	2	that	that	PRON
ihlr-22948	508	3	permitted	permit	VERB
ihlr-22948	508	4	individuals	individual	NOUN
ihlr-22948	508	5	to	to	PART
ihlr-22948	508	6	enroll	enroll	VERB
ihlr-22948	508	7	and	and	CCONJ
ihlr-22948	508	8	submit	submit	VERB
ihlr-22948	508	9	information	information	NOUN
ihlr-22948	508	10	themselves	themselves	PRON
ihlr-22948	508	11	had	have	VERB
ihlr-22948	508	12	very	very	ADV
ihlr-22948	508	13	limited	limited	ADJ
ihlr-22948	508	14	identity	identity	NOUN
ihlr-22948	508	15	management	management	NOUN
ihlr-22948	508	16	structures	structure	NOUN
ihlr-22948	508	17	in	in	ADP
ihlr-22948	508	18	place	place	NOUN
ihlr-22948	508	19	;	;	PUNCT
ihlr-22948	508	20	only	only	ADV
ihlr-22948	508	21	one	one	NUM
ihlr-22948	508	22	registry	registry	NOUN
ihlr-22948	508	23	had	have	VERB
ihlr-22948	508	24	a	a	DET
ihlr-22948	508	25	specific	specific	ADJ
ihlr-22948	508	26	process	process	NOUN
ihlr-22948	508	27	for	for	ADP
ihlr-22948	508	28	identity	identity	NOUN
ihlr-22948	508	29	proofing	proofing	NOUN
ihlr-22948	508	30	and	and	CCONJ
ihlr-22948	508	31	no	no	DET
ihlr-22948	508	32	registry	registry	NOUN
ihlr-22948	508	33	required	require	VERB
ihlr-22948	508	34	any	any	DET
ihlr-22948	508	35	kind	kind	NOUN
ihlr-22948	508	36	of	of	ADP
ihlr-22948	508	37	in	in	ADP
ihlr-22948	508	38	person	person	NOUN
ihlr-22948	508	39	identity	identity	NOUN
ihlr-22948	508	40	verification	verification	NOUN
ihlr-22948	508	41	before	before	SCONJ
ihlr-22948	508	42	participants	participant	NOUN
ihlr-22948	508	43	could	could	AUX
ihlr-22948	508	44	sign	sign	VERB
ihlr-22948	508	45	up	up	ADP
ihlr-22948	508	46	for	for	ADP
ihlr-22948	508	47	the	the	DET
ihlr-22948	508	48	registry	registry	NOUN
ihlr-22948	508	49	.	.	PUNCT
ihlr-22948	509	1	the	the	DET
ihlr-22948	509	2	longitudinal	longitudinal	ADJ
ihlr-22948	509	3	nature	nature	NOUN
ihlr-22948	509	4	of	of	ADP
ihlr-22948	509	5	many	many	ADJ
ihlr-22948	509	6	registries	registry	NOUN
ihlr-22948	509	7	poses	pose	VERB
ihlr-22948	509	8	additional	additional	ADJ
ihlr-22948	509	9	complications	complication	NOUN
ihlr-22948	509	10	for	for	ADP
ihlr-22948	509	11	participants	participant	NOUN
ihlr-22948	509	12	’	'	PUNCT
ihlr-22948	509	13	consent	consent	NOUN
ihlr-22948	509	14	to	to	ADP
ihlr-22948	509	15	participation	participation	NOUN
ihlr-22948	509	16	.	.	PUNCT
ihlr-22948	510	1	many	many	ADJ
ihlr-22948	510	2	registries	registry	NOUN
ihlr-22948	510	3	are	be	AUX
ihlr-22948	510	4	devoted	devote	VERB
ihlr-22948	510	5	to	to	ADP
ihlr-22948	510	6	conditions	condition	NOUN
ihlr-22948	510	7	that	that	PRON
ihlr-22948	510	8	become	become	VERB
ihlr-22948	510	9	manifest	manifest	ADJ
ihlr-22948	510	10	by	by	ADP
ihlr-22948	510	11	very	very	ADV
ihlr-22948	510	12	early	early	ADJ
ihlr-22948	510	13	childhood	childhood	NOUN
ihlr-22948	510	14	;	;	PUNCT
ihlr-22948	510	15	in	in	ADP
ihlr-22948	510	16	such	such	ADJ
ihlr-22948	510	17	cases	case	NOUN
ihlr-22948	510	18	,	,	PUNCT
ihlr-22948	510	19	participants	participant	NOUN
ihlr-22948	510	20	are	be	AUX
ihlr-22948	510	21	enrolled	enrol	VERB
ihlr-22948	510	22	by	by	ADP
ihlr-22948	510	23	their	their	PRON
ihlr-22948	510	24	parents	parent	NOUN
ihlr-22948	510	25	and	and	CCONJ
ihlr-22948	510	26	may	may	AUX
ihlr-22948	510	27	never	never	ADV
ihlr-22948	510	28	become	become	VERB
ihlr-22948	510	29	aware	aware	ADJ
ihlr-22948	510	30	of	of	ADP
ihlr-22948	510	31	their	their	PRON
ihlr-22948	510	32	inclusion	inclusion	NOUN
ihlr-22948	510	33	in	in	ADP
ihlr-22948	510	34	the	the	DET
ihlr-22948	510	35	registry	registry	NOUN
ihlr-22948	510	36	.	.	PUNCT
ihlr-22948	511	1	even	even	ADV
ihlr-22948	511	2	when	when	SCONJ
ihlr-22948	511	3	participants	participant	NOUN
ihlr-22948	511	4	were	be	AUX
ihlr-22948	511	5	aware	aware	ADJ
ihlr-22948	511	6	of	of	ADP
ihlr-22948	511	7	their	their	PRON
ihlr-22948	511	8	inclusion	inclusion	NOUN
ihlr-22948	511	9	at	at	ADP
ihlr-22948	511	10	the	the	DET
ihlr-22948	511	11	outset	outset	NOUN
ihlr-22948	511	12	,	,	PUNCT
ihlr-22948	511	13	they	they	PRON
ihlr-22948	511	14	may	may	AUX
ihlr-22948	511	15	lose	lose	VERB
ihlr-22948	511	16	touch	touch	NOUN
ihlr-22948	511	17	with	with	ADP
ihlr-22948	511	18	their	their	PRON
ihlr-22948	511	19	participation	participation	NOUN
ihlr-22948	511	20	in	in	ADP
ihlr-22948	511	21	the	the	DET
ihlr-22948	511	22	registry	registry	NOUN
ihlr-22948	511	23	and	and	CCONJ
ihlr-22948	511	24	ultimately	ultimately	ADV
ihlr-22948	511	25	forget	forget	VERB
ihlr-22948	511	26	that	that	SCONJ
ihlr-22948	511	27	their	their	PRON
ihlr-22948	511	28	clinicians	clinician	NOUN
ihlr-22948	511	29	may	may	AUX
ihlr-22948	511	30	nonetheless	nonetheless	ADV
ihlr-22948	511	31	continue	continue	VERB
ihlr-22948	511	32	to	to	PART
ihlr-22948	511	33	update	update	VERB
ihlr-22948	511	34	information	information	NOUN
ihlr-22948	511	35	about	about	ADP
ihlr-22948	511	36	them	they	PRON
ihlr-22948	511	37	in	in	ADP
ihlr-22948	511	38	the	the	DET
ihlr-22948	511	39	registry	registry	NOUN
ihlr-22948	511	40	.	.	PUNCT
ihlr-22948	512	1	consent	consent	NOUN
ihlr-22948	512	2	to	to	ADP
ihlr-22948	512	3	registry	registry	NOUN
ihlr-22948	512	4	participation	participation	NOUN
ihlr-22948	512	5	,	,	PUNCT
ihlr-22948	512	6	that	that	ADV
ihlr-22948	512	7	is	is	ADV
ihlr-22948	512	8	,	,	PUNCT
ihlr-22948	512	9	may	may	AUX
ihlr-22948	512	10	take	take	VERB
ihlr-22948	512	11	place	place	NOUN
ihlr-22948	512	12	at	at	ADP
ihlr-22948	512	13	a	a	DET
ihlr-22948	512	14	single	single	ADJ
ihlr-22948	512	15	point	point	NOUN
ihlr-22948	512	16	in	in	ADP
ihlr-22948	512	17	time	time	NOUN
ihlr-22948	512	18	whereas	whereas	SCONJ
ihlr-22948	512	19	registry	registry	NOUN
ihlr-22948	512	20	participation	participation	NOUN
ihlr-22948	512	21	is	be	AUX
ihlr-22948	512	22	ongoing	ongoing	ADJ
ihlr-22948	512	23	.	.	PUNCT
ihlr-22948	513	1	some	some	DET
ihlr-22948	513	2	registries	registry	NOUN
ihlr-22948	513	3	are	be	AUX
ihlr-22948	513	4	structured	structure	VERB
ihlr-22948	513	5	to	to	PART
ihlr-22948	513	6	require	require	VERB
ihlr-22948	513	7	new	new	ADJ
ihlr-22948	513	8	consent	consent	NOUN
ihlr-22948	513	9	for	for	ADP
ihlr-22948	513	10	participation	participation	NOUN
ihlr-22948	513	11	in	in	ADP
ihlr-22948	513	12	research	research	NOUN
ihlr-22948	513	13	sponsored	sponsor	VERB
ihlr-22948	513	14	by	by	ADP
ihlr-22948	513	15	the	the	DET
ihlr-22948	513	16	registry	registry	NOUN
ihlr-22948	513	17	,	,	PUNCT
ihlr-22948	513	18	but	but	CCONJ
ihlr-22948	513	19	others	other	NOUN
ihlr-22948	513	20	do	do	AUX
ihlr-22948	513	21	not	not	PART
ihlr-22948	513	22	require	require	VERB
ihlr-22948	513	23	renewed	renew	VERB
ihlr-22948	513	24	consent	consent	NOUN
ihlr-22948	513	25	for	for	ADP
ihlr-22948	513	26	research	research	NOUN
ihlr-22948	513	27	uses	use	NOUN
ihlr-22948	513	28	of	of	ADP
ihlr-22948	513	29	the	the	DET
ihlr-22948	513	30	data	datum	NOUN
ihlr-22948	513	31	contained	contain	VERB
ihlr-22948	513	32	in	in	ADP
ihlr-22948	513	33	the	the	DET
ihlr-22948	513	34	registry	registry	NOUN
ihlr-22948	513	35	.	.	PUNCT
ihlr-22948	514	1	4	4	X
ihlr-22948	514	2	.	.	X
ihlr-22948	514	3	data	datum	NOUN
ihlr-22948	514	4	protection	protection	NOUN
ihlr-22948	514	5	and	and	CCONJ
ihlr-22948	514	6	privacy	privacy	NOUN
ihlr-22948	514	7	data	datum	NOUN
ihlr-22948	514	8	protection	protection	NOUN
ihlr-22948	514	9	and	and	CCONJ
ihlr-22948	514	10	privacy	privacy	NOUN
ihlr-22948	514	11	are	be	AUX
ihlr-22948	514	12	core	core	NOUN
ihlr-22948	514	13	to	to	ADP
ihlr-22948	514	14	fips	fip	NOUN
ihlr-22948	514	15	.	.	PUNCT
ihlr-22948	515	1	questions	question	NOUN
ihlr-22948	515	2	in	in	ADP
ihlr-22948	515	3	this	this	DET
ihlr-22948	515	4	portion	portion	NOUN
ihlr-22948	515	5	of	of	ADP
ihlr-22948	515	6	the	the	DET
ihlr-22948	515	7	questionnaire	questionnaire	NOUN
ihlr-22948	515	8	were	be	AUX
ihlr-22948	515	9	the	the	DET
ihlr-22948	515	10	most	most	ADV
ihlr-22948	515	11	numerous	numerous	ADJ
ihlr-22948	515	12	and	and	CCONJ
ihlr-22948	515	13	likely	likely	ADJ
ihlr-22948	515	14	the	the	DET
ihlr-22948	515	15	most	most	ADV
ihlr-22948	515	16	difficult	difficult	ADJ
ihlr-22948	515	17	for	for	SCONJ
ihlr-22948	515	18	registries	registry	NOUN
ihlr-22948	515	19	to	to	PART
ihlr-22948	515	20	answer	answer	VERB
ihlr-22948	515	21	.	.	PUNCT
ihlr-22948	516	1	indeed	indeed	ADV
ihlr-22948	516	2	,	,	PUNCT
ihlr-22948	516	3	many	many	ADJ
ihlr-22948	516	4	registries	registry	NOUN
ihlr-22948	516	5	deferred	defer	VERB
ihlr-22948	516	6	answering	answer	VERB
ihlr-22948	516	7	a	a	DET
ihlr-22948	516	8	significant	significant	ADJ
ihlr-22948	516	9	portion	portion	NOUN
ihlr-22948	516	10	of	of	ADP
ihlr-22948	516	11	the	the	DET
ihlr-22948	516	12	questions	question	NOUN
ihlr-22948	516	13	relating	relate	VERB
ihlr-22948	516	14	to	to	ADP
ihlr-22948	516	15	the	the	DET
ihlr-22948	516	16	registry	registry	NOUN
ihlr-22948	516	17	’s	’s	PART
ihlr-22948	516	18	data	data	PROPN
ihlr-22948	516	19	protection	protection	NOUN
ihlr-22948	516	20	policies	policy	NOUN
ihlr-22948	516	21	from	from	ADP
ihlr-22948	516	22	explicit	explicit	ADJ
ihlr-22948	516	23	liability	liability	NOUN
ihlr-22948	516	24	concerns	concern	NOUN
ihlr-22948	516	25	.	.	PUNCT
ihlr-22948	517	1	registries	registry	NOUN
ihlr-22948	517	2	also	also	ADV
ihlr-22948	517	3	expressed	express	VERB
ihlr-22948	517	4	concern	concern	NOUN
ihlr-22948	517	5	that	that	SCONJ
ihlr-22948	517	6	answering	answer	VERB
ihlr-22948	517	7	questions	question	NOUN
ihlr-22948	517	8	that	that	PRON
ihlr-22948	517	9	touched	touch	VERB
ihlr-22948	517	10	on	on	ADP
ihlr-22948	517	11	their	their	PRON
ihlr-22948	517	12	registry	registry	NOUN
ihlr-22948	517	13	privacy	privacy	NOUN
ihlr-22948	517	14	protocol	protocol	NOUN
ihlr-22948	517	15	would	would	AUX
ihlr-22948	517	16	provide	provide	VERB
ihlr-22948	517	17	with	with	ADP
ihlr-22948	517	18	too	too	ADV
ihlr-22948	517	19	much	much	ADJ
ihlr-22948	517	20	information	information	NOUN
ihlr-22948	517	21	.	.	PUNCT
ihlr-22948	518	1	64	64	NUM
ihlr-22948	518	2	indiana	indiana	PROPN
ihlr-22948	518	3	health	health	PROPN
ihlr-22948	518	4	law	law	NOUN
ihlr-22948	518	5	review	review	NOUN
ihlr-22948	518	6	[	[	X
ihlr-22948	518	7	vol	vol	NOUN
ihlr-22948	518	8	.	.	PUNCT
ihlr-22948	519	1	16:43	16:43	NUM
ihlr-22948	519	2	many	many	ADJ
ihlr-22948	519	3	registries	registry	NOUN
ihlr-22948	519	4	simply	simply	ADV
ihlr-22948	519	5	stated	state	VERB
ihlr-22948	519	6	that	that	SCONJ
ihlr-22948	519	7	they	they	PRON
ihlr-22948	519	8	were	be	AUX
ihlr-22948	519	9	unable	unable	ADJ
ihlr-22948	519	10	to	to	PART
ihlr-22948	519	11	answer	answer	VERB
ihlr-22948	519	12	these	these	DET
ihlr-22948	519	13	questions	question	NOUN
ihlr-22948	519	14	about	about	ADP
ihlr-22948	519	15	data	datum	NOUN
ihlr-22948	519	16	protection	protection	NOUN
ihlr-22948	519	17	and	and	CCONJ
ihlr-22948	519	18	use	use	NOUN
ihlr-22948	519	19	.	.	PUNCT
ihlr-22948	520	1	questions	question	NOUN
ihlr-22948	520	2	included	include	VERB
ihlr-22948	520	3	the	the	DET
ihlr-22948	520	4	extent	extent	NOUN
ihlr-22948	520	5	to	to	PART
ihlr-22948	520	6	which	which	PRON
ihlr-22948	520	7	the	the	DET
ihlr-22948	520	8	registry	registry	NOUN
ihlr-22948	520	9	made	make	VERB
ihlr-22948	520	10	clear	clear	ADJ
ihlr-22948	520	11	to	to	ADP
ihlr-22948	520	12	participants	participant	NOUN
ihlr-22948	520	13	the	the	DET
ihlr-22948	520	14	purposes	purpose	NOUN
ihlr-22948	520	15	for	for	ADP
ihlr-22948	520	16	which	which	PRON
ihlr-22948	520	17	information	information	NOUN
ihlr-22948	520	18	would	would	AUX
ihlr-22948	520	19	be	be	AUX
ihlr-22948	520	20	used	use	VERB
ihlr-22948	520	21	and	and	CCONJ
ihlr-22948	520	22	whether	whether	SCONJ
ihlr-22948	520	23	subsequent	subsequent	ADJ
ihlr-22948	520	24	uses	use	NOUN
ihlr-22948	520	25	would	would	AUX
ihlr-22948	520	26	be	be	AUX
ihlr-22948	520	27	limited	limit	VERB
ihlr-22948	520	28	to	to	ADP
ihlr-22948	520	29	the	the	DET
ihlr-22948	520	30	initial	initial	ADJ
ihlr-22948	520	31	specified	specify	VERB
ihlr-22948	520	32	purposes	purpose	NOUN
ihlr-22948	520	33	.	.	PUNCT
ihlr-22948	521	1	interviews	interview	NOUN
ihlr-22948	521	2	also	also	ADV
ihlr-22948	521	3	asked	ask	VERB
ihlr-22948	521	4	whether	whether	SCONJ
ihlr-22948	521	5	there	there	PRON
ihlr-22948	521	6	was	be	VERB
ihlr-22948	521	7	clarity	clarity	NOUN
ihlr-22948	521	8	about	about	ADP
ihlr-22948	521	9	who	who	PRON
ihlr-22948	521	10	would	would	AUX
ihlr-22948	521	11	have	have	AUX
ihlr-22948	521	12	access	access	NOUN
ihlr-22948	521	13	to	to	ADP
ihlr-22948	521	14	the	the	DET
ihlr-22948	521	15	data	datum	NOUN
ihlr-22948	521	16	,	,	PUNCT
ihlr-22948	521	17	including	include	VERB
ihlr-22948	521	18	whether	whether	SCONJ
ihlr-22948	521	19	participants	participant	NOUN
ihlr-22948	521	20	would	would	AUX
ihlr-22948	521	21	have	have	AUX
ihlr-22948	521	22	access	access	NOUN
ihlr-22948	521	23	to	to	ADP
ihlr-22948	521	24	data	datum	NOUN
ihlr-22948	521	25	about	about	ADP
ihlr-22948	521	26	themselves	themselves	PRON
ihlr-22948	521	27	.	.	PUNCT
ihlr-22948	522	1	when	when	SCONJ
ihlr-22948	522	2	participants	participant	NOUN
ihlr-22948	522	3	submit	submit	VERB
ihlr-22948	522	4	data	datum	NOUN
ihlr-22948	522	5	themselves	themselves	PRON
ihlr-22948	522	6	,	,	PUNCT
ihlr-22948	522	7	they	they	PRON
ihlr-22948	522	8	presumably	presumably	ADV
ihlr-22948	522	9	are	be	AUX
ihlr-22948	522	10	aware	aware	ADJ
ihlr-22948	522	11	they	they	PRON
ihlr-22948	522	12	are	be	AUX
ihlr-22948	522	13	making	make	VERB
ihlr-22948	522	14	the	the	DET
ihlr-22948	522	15	submission	submission	NOUN
ihlr-22948	522	16	,	,	PUNCT
ihlr-22948	522	17	at	at	ADP
ihlr-22948	522	18	least	least	ADJ
ihlr-22948	522	19	at	at	ADP
ihlr-22948	522	20	the	the	DET
ihlr-22948	522	21	time	time	NOUN
ihlr-22948	522	22	it	it	PRON
ihlr-22948	522	23	occurs	occur	VERB
ihlr-22948	522	24	.	.	PUNCT
ihlr-22948	523	1	when	when	SCONJ
ihlr-22948	523	2	clinicians	clinician	NOUN
ihlr-22948	523	3	supply	supply	VERB
ihlr-22948	523	4	data	datum	NOUN
ihlr-22948	523	5	to	to	ADP
ihlr-22948	523	6	the	the	DET
ihlr-22948	523	7	registry	registry	NOUN
ihlr-22948	523	8	,	,	PUNCT
ihlr-22948	523	9	however	however	ADV
ihlr-22948	523	10	,	,	PUNCT
ihlr-22948	523	11	patients	patient	NOUN
ihlr-22948	523	12	may	may	AUX
ihlr-22948	523	13	not	not	PART
ihlr-22948	523	14	have	have	VERB
ihlr-22948	523	15	the	the	DET
ihlr-22948	523	16	opportunity	opportunity	NOUN
ihlr-22948	523	17	to	to	PART
ihlr-22948	523	18	know	know	VERB
ihlr-22948	523	19	what	what	PRON
ihlr-22948	523	20	data	datum	NOUN
ihlr-22948	523	21	has	have	AUX
ihlr-22948	523	22	been	be	AUX
ihlr-22948	523	23	submitted	submit	VERB
ihlr-22948	523	24	and	and	CCONJ
ihlr-22948	523	25	to	to	PART
ihlr-22948	523	26	request	request	VERB
ihlr-22948	523	27	correction	correction	NOUN
ihlr-22948	523	28	of	of	ADP
ihlr-22948	523	29	any	any	DET
ihlr-22948	523	30	errors	error	NOUN
ihlr-22948	523	31	.	.	PUNCT
ihlr-22948	524	1	findings	finding	NOUN
ihlr-22948	524	2	from	from	ADP
ihlr-22948	524	3	the	the	DET
ihlr-22948	524	4	interviews	interview	NOUN
ihlr-22948	524	5	were	be	AUX
ihlr-22948	524	6	that	that	SCONJ
ihlr-22948	524	7	twelve	twelve	NUM
ihlr-22948	524	8	registries	registry	NOUN
ihlr-22948	524	9	specify	specify	VERB
ihlr-22948	524	10	the	the	DET
ihlr-22948	524	11	purpose	purpose	NOUN
ihlr-22948	524	12	for	for	ADP
ihlr-22948	524	13	which	which	PRON
ihlr-22948	524	14	data	datum	NOUN
ihlr-22948	524	15	are	be	AUX
ihlr-22948	524	16	being	be	AUX
ihlr-22948	524	17	collected	collect	VERB
ihlr-22948	524	18	.	.	PUNCT
ihlr-22948	525	1	none	none	NOUN
ihlr-22948	525	2	indicated	indicate	VERB
ihlr-22948	525	3	explicit	explicit	ADJ
ihlr-22948	525	4	policies	policy	NOUN
ihlr-22948	525	5	about	about	ADP
ihlr-22948	525	6	letting	let	VERB
ihlr-22948	525	7	participants	participant	NOUN
ihlr-22948	525	8	obtain	obtain	VERB
ihlr-22948	525	9	a	a	DET
ihlr-22948	525	10	copy	copy	NOUN
ihlr-22948	525	11	of	of	ADP
ihlr-22948	525	12	information	information	NOUN
ihlr-22948	525	13	about	about	ADP
ihlr-22948	525	14	them	they	PRON
ihlr-22948	525	15	in	in	ADP
ihlr-22948	525	16	the	the	DET
ihlr-22948	525	17	registry	registry	NOUN
ihlr-22948	525	18	or	or	CCONJ
ihlr-22948	525	19	suggest	suggest	VERB
ihlr-22948	525	20	corrections	correction	NOUN
ihlr-22948	525	21	for	for	ADP
ihlr-22948	525	22	this	this	DET
ihlr-22948	525	23	information	information	NOUN
ihlr-22948	525	24	in	in	ADP
ihlr-22948	525	25	the	the	DET
ihlr-22948	525	26	registry	registry	NOUN
ihlr-22948	525	27	.	.	PUNCT
ihlr-22948	526	1	six	six	NUM
ihlr-22948	526	2	had	have	VERB
ihlr-22948	526	3	explicit	explicit	ADJ
ihlr-22948	526	4	use	use	NOUN
ihlr-22948	526	5	limitation	limitation	NOUN
ihlr-22948	526	6	requirements	requirement	NOUN
ihlr-22948	526	7	.	.	PUNCT
ihlr-22948	527	1	seven	seven	NUM
ihlr-22948	527	2	limited	limited	ADJ
ihlr-22948	527	3	access	access	NOUN
ihlr-22948	527	4	to	to	ADP
ihlr-22948	527	5	registry	registry	NOUN
ihlr-22948	527	6	data	datum	NOUN
ihlr-22948	527	7	to	to	ADP
ihlr-22948	527	8	specific	specific	ADJ
ihlr-22948	527	9	registry	registry	NOUN
ihlr-22948	527	10	personnel	personnel	NOUN
ihlr-22948	527	11	.	.	PUNCT
ihlr-22948	528	1	five	five	NUM
ihlr-22948	528	2	registries	registry	NOUN
ihlr-22948	528	3	allowed	allow	VERB
ihlr-22948	528	4	data	datum	NOUN
ihlr-22948	528	5	to	to	PART
ihlr-22948	528	6	be	be	AUX
ihlr-22948	528	7	shared	share	VERB
ihlr-22948	528	8	with	with	ADP
ihlr-22948	528	9	external	external	ADJ
ihlr-22948	528	10	organizations	organization	NOUN
ihlr-22948	528	11	—	—	PUNCT
ihlr-22948	528	12	but	but	CCONJ
ihlr-22948	528	13	none	none	NOUN
ihlr-22948	528	14	of	of	ADP
ihlr-22948	528	15	these	these	PRON
ihlr-22948	528	16	had	have	VERB
ihlr-22948	528	17	a	a	DET
ihlr-22948	528	18	data	data	NOUN
ihlr-22948	528	19	use	use	NOUN
ihlr-22948	528	20	agreement	agreement	NOUN
ihlr-22948	528	21	they	they	PRON
ihlr-22948	528	22	were	be	AUX
ihlr-22948	528	23	willing	willing	ADJ
ihlr-22948	528	24	to	to	PART
ihlr-22948	528	25	share	share	VERB
ihlr-22948	528	26	.	.	PUNCT
ihlr-22948	529	1	security	security	NOUN
ihlr-22948	529	2	practices	practice	NOUN
ihlr-22948	529	3	were	be	AUX
ihlr-22948	529	4	also	also	ADV
ihlr-22948	529	5	an	an	DET
ihlr-22948	529	6	area	area	NOUN
ihlr-22948	529	7	of	of	ADP
ihlr-22948	529	8	concern	concern	NOUN
ihlr-22948	529	9	raised	raise	VERB
ihlr-22948	529	10	in	in	ADP
ihlr-22948	529	11	the	the	DET
ihlr-22948	529	12	interviews	interview	NOUN
ihlr-22948	529	13	.	.	PUNCT
ihlr-22948	530	1	four	four	NUM
ihlr-22948	530	2	registries	registry	NOUN
ihlr-22948	530	3	had	have	VERB
ihlr-22948	530	4	explicit	explicit	ADJ
ihlr-22948	530	5	data	datum	NOUN
ihlr-22948	530	6	security	security	NOUN
ihlr-22948	530	7	practices	practice	NOUN
ihlr-22948	530	8	and	and	CCONJ
ihlr-22948	530	9	set	set	VERB
ihlr-22948	530	10	a	a	DET
ihlr-22948	530	11	minimum	minimum	ADJ
ihlr-22948	530	12	standard	standard	NOUN
ihlr-22948	530	13	of	of	ADP
ihlr-22948	530	14	care	care	NOUN
ihlr-22948	530	15	for	for	ADP
ihlr-22948	530	16	data	data	NOUN
ihlr-22948	530	17	security	security	NOUN
ihlr-22948	530	18	protection	protection	NOUN
ihlr-22948	530	19	.	.	PUNCT
ihlr-22948	531	1	no	no	DET
ihlr-22948	531	2	registries	registry	NOUN
ihlr-22948	531	3	had	have	AUX
ihlr-22948	531	4	adopted	adopt	VERB
ihlr-22948	531	5	breach	breach	NOUN
ihlr-22948	531	6	notification	notification	NOUN
ihlr-22948	531	7	processes	process	NOUN
ihlr-22948	531	8	and	and	CCONJ
ihlr-22948	531	9	no	no	DET
ihlr-22948	531	10	registries	registry	NOUN
ihlr-22948	531	11	reported	report	VERB
ihlr-22948	531	12	awareness	awareness	NOUN
ihlr-22948	531	13	of	of	ADP
ihlr-22948	531	14	any	any	DET
ihlr-22948	531	15	data	data	NOUN
ihlr-22948	531	16	breaches	breach	NOUN
ihlr-22948	531	17	.	.	PUNCT
ihlr-22948	532	1	vi	vi	X
ihlr-22948	532	2	.	.	PUNCT
ihlr-22948	533	1	recommendations	recommendation	NOUN
ihlr-22948	533	2	and	and	CCONJ
ihlr-22948	533	3	conclusion	conclusion	NOUN
ihlr-22948	533	4	as	as	SCONJ
ihlr-22948	533	5	this	this	DET
ihlr-22948	533	6	snapshot	snapshot	NOUN
ihlr-22948	533	7	may	may	AUX
ihlr-22948	533	8	indicate	indicate	VERB
ihlr-22948	533	9	,	,	PUNCT
ihlr-22948	533	10	registries	registry	NOUN
ihlr-22948	533	11	vary	vary	VERB
ihlr-22948	533	12	widely	widely	ADV
ihlr-22948	533	13	with	with	ADP
ihlr-22948	533	14	respect	respect	NOUN
ihlr-22948	533	15	to	to	ADP
ihlr-22948	533	16	the	the	DET
ihlr-22948	533	17	extent	extent	NOUN
ihlr-22948	533	18	to	to	PART
ihlr-22948	533	19	which	which	PRON
ihlr-22948	533	20	they	they	PRON
ihlr-22948	533	21	have	have	VERB
ihlr-22948	533	22	explicit	explicit	ADJ
ihlr-22948	533	23	policies	policy	NOUN
ihlr-22948	533	24	that	that	PRON
ihlr-22948	533	25	reflect	reflect	VERB
ihlr-22948	533	26	the	the	DET
ihlr-22948	533	27	core	core	ADJ
ihlr-22948	533	28	values	value	NOUN
ihlr-22948	533	29	of	of	ADP
ihlr-22948	533	30	fips	fip	NOUN
ihlr-22948	533	31	and	and	CCONJ
ihlr-22948	533	32	data	datum	NOUN
ihlr-22948	533	33	stewardship	stewardship	NOUN
ihlr-22948	533	34	.	.	PUNCT
ihlr-22948	534	1	the	the	DET
ihlr-22948	534	2	interview	interview	NOUN
ihlr-22948	534	3	data	datum	NOUN
ihlr-22948	534	4	are	be	AUX
ihlr-22948	534	5	limited	limited	ADJ
ihlr-22948	534	6	,	,	PUNCT
ihlr-22948	534	7	however	however	ADV
ihlr-22948	534	8	,	,	PUNCT
ihlr-22948	534	9	and	and	CCONJ
ihlr-22948	534	10	must	must	AUX
ihlr-22948	534	11	be	be	AUX
ihlr-22948	534	12	viewed	view	VERB
ihlr-22948	534	13	with	with	ADP
ihlr-22948	534	14	the	the	DET
ihlr-22948	534	15	caution	caution	NOUN
ihlr-22948	534	16	that	that	SCONJ
ihlr-22948	534	17	they	they	PRON
ihlr-22948	534	18	may	may	AUX
ihlr-22948	534	19	reflect	reflect	VERB
ihlr-22948	534	20	an	an	DET
ihlr-22948	534	21	unwillingness	unwillingness	NOUN
ihlr-22948	534	22	to	to	PART
ihlr-22948	534	23	share	share	VERB
ihlr-22948	534	24	information	information	NOUN
ihlr-22948	534	25	about	about	ADP
ihlr-22948	534	26	policies	policy	NOUN
ihlr-22948	534	27	rather	rather	ADV
ihlr-22948	534	28	than	than	ADP
ihlr-22948	534	29	the	the	DET
ihlr-22948	534	30	lack	lack	NOUN
ihlr-22948	534	31	of	of	ADP
ihlr-22948	534	32	policies	policy	NOUN
ihlr-22948	534	33	.	.	PUNCT
ihlr-22948	535	1	it	it	PRON
ihlr-22948	535	2	is	be	AUX
ihlr-22948	535	3	also	also	ADV
ihlr-22948	535	4	fair	fair	ADJ
ihlr-22948	535	5	to	to	PART
ihlr-22948	535	6	say	say	VERB
ihlr-22948	535	7	that	that	SCONJ
ihlr-22948	535	8	some	some	PRON
ihlr-22948	535	9	of	of	ADP
ihlr-22948	535	10	the	the	DET
ihlr-22948	535	11	larger	large	ADJ
ihlr-22948	535	12	and	and	CCONJ
ihlr-22948	535	13	more	more	ADV
ihlr-22948	535	14	established	establish	VERB
ihlr-22948	535	15	registries	registry	NOUN
ihlr-22948	535	16	were	be	AUX
ihlr-22948	535	17	among	among	ADP
ihlr-22948	535	18	the	the	DET
ihlr-22948	535	19	ones	one	NOUN
ihlr-22948	535	20	with	with	ADP
ihlr-22948	535	21	more	more	ADV
ihlr-22948	535	22	extensive	extensive	ADJ
ihlr-22948	535	23	data	datum	NOUN
ihlr-22948	535	24	management	management	NOUN
ihlr-22948	535	25	and	and	CCONJ
ihlr-22948	535	26	protection	protection	NOUN
ihlr-22948	535	27	policies	policy	NOUN
ihlr-22948	535	28	,	,	PUNCT
ihlr-22948	535	29	but	but	CCONJ
ihlr-22948	535	30	this	this	DET
ihlr-22948	535	31	generalization	generalization	NOUN
ihlr-22948	535	32	did	do	AUX
ihlr-22948	535	33	not	not	PART
ihlr-22948	535	34	always	always	ADV
ihlr-22948	535	35	hold	hold	VERB
ihlr-22948	535	36	.	.	PUNCT
ihlr-22948	536	1	nonetheless	nonetheless	ADV
ihlr-22948	536	2	,	,	PUNCT
ihlr-22948	536	3	the	the	DET
ihlr-22948	536	4	interview	interview	NOUN
ihlr-22948	536	5	findings	finding	NOUN
ihlr-22948	536	6	give	give	VERB
ihlr-22948	536	7	significant	significant	ADJ
ihlr-22948	536	8	reason	reason	NOUN
ihlr-22948	536	9	for	for	ADP
ihlr-22948	536	10	concern	concern	NOUN
ihlr-22948	536	11	.	.	PUNCT
ihlr-22948	537	1	registries	registry	NOUN
ihlr-22948	537	2	may	may	AUX
ihlr-22948	537	3	be	be	AUX
ihlr-22948	537	4	more	more	ADV
ihlr-22948	537	5	enthusiastic	enthusiastic	ADJ
ihlr-22948	537	6	collectors	collector	NOUN
ihlr-22948	537	7	of	of	ADP
ihlr-22948	537	8	information	information	NOUN
ihlr-22948	537	9	than	than	SCONJ
ihlr-22948	537	10	they	they	PRON
ihlr-22948	537	11	are	be	AUX
ihlr-22948	537	12	protectors	protector	NOUN
ihlr-22948	537	13	of	of	ADP
ihlr-22948	537	14	it	it	PRON
ihlr-22948	537	15	.	.	PUNCT
ihlr-22948	538	1	if	if	SCONJ
ihlr-22948	538	2	so	so	ADV
ihlr-22948	538	3	,	,	PUNCT
ihlr-22948	538	4	at	at	ADP
ihlr-22948	538	5	least	least	ADJ
ihlr-22948	538	6	some	some	PRON
ihlr-22948	538	7	registries	registry	NOUN
ihlr-22948	538	8	would	would	AUX
ihlr-22948	538	9	appear	appear	VERB
ihlr-22948	538	10	to	to	PART
ihlr-22948	538	11	be	be	AUX
ihlr-22948	538	12	at	at	ADP
ihlr-22948	538	13	significant	significant	ADJ
ihlr-22948	538	14	risk	risk	NOUN
ihlr-22948	538	15	of	of	ADP
ihlr-22948	538	16	experiencing	experience	VERB
ihlr-22948	538	17	problems	problem	NOUN
ihlr-22948	538	18	with	with	ADP
ihlr-22948	538	19	their	their	PRON
ihlr-22948	538	20	use	use	NOUN
ihlr-22948	538	21	and	and	CCONJ
ihlr-22948	538	22	protection	protection	NOUN
ihlr-22948	538	23	of	of	ADP
ihlr-22948	538	24	information	information	NOUN
ihlr-22948	538	25	—	—	PUNCT
ihlr-22948	538	26	problems	problem	NOUN
ihlr-22948	538	27	that	that	PRON
ihlr-22948	538	28	could	could	AUX
ihlr-22948	538	29	undermine	undermine	VERB
ihlr-22948	538	30	trust	trust	NOUN
ihlr-22948	538	31	and	and	CCONJ
ihlr-22948	538	32	participation	participation	NOUN
ihlr-22948	538	33	in	in	ADP
ihlr-22948	538	34	the	the	DET
ihlr-22948	538	35	registry	registry	NOUN
ihlr-22948	538	36	enterprise	enterprise	NOUN
ihlr-22948	538	37	.	.	PUNCT
ihlr-22948	539	1	registries	registry	NOUN
ihlr-22948	539	2	should	should	AUX
ihlr-22948	539	3	be	be	AUX
ihlr-22948	539	4	encouraged	encourage	VERB
ihlr-22948	539	5	,	,	PUNCT
ihlr-22948	539	6	at	at	ADP
ihlr-22948	539	7	a	a	DET
ihlr-22948	539	8	minimum	minimum	NOUN
ihlr-22948	539	9	,	,	PUNCT
ihlr-22948	539	10	to	to	PART
ihlr-22948	539	11	develop	develop	VERB
ihlr-22948	539	12	governance	governance	NOUN
ihlr-22948	539	13	and	and	CCONJ
ihlr-22948	539	14	oversight	oversight	VERB
ihlr-22948	539	15	plans.102	plans.102	NOUN
ihlr-22948	539	16	they	they	PRON
ihlr-22948	539	17	should	should	AUX
ihlr-22948	539	18	develop	develop	VERB
ihlr-22948	539	19	explicit	explicit	ADJ
ihlr-22948	539	20	policies	policy	NOUN
ihlr-22948	539	21	for	for	ADP
ihlr-22948	539	22	specifying	specify	VERB
ihlr-22948	539	23	the	the	DET
ihlr-22948	539	24	purposes	purpose	NOUN
ihlr-22948	539	25	of	of	ADP
ihlr-22948	539	26	data	datum	NOUN
ihlr-22948	539	27	collection	collection	NOUN
ihlr-22948	539	28	and	and	CCONJ
ihlr-22948	539	29	limitations	limitation	NOUN
ihlr-22948	539	30	on	on	ADP
ihlr-22948	539	31	data	datum	NOUN
ihlr-22948	539	32	use	use	NOUN
ihlr-22948	539	33	.	.	PUNCT
ihlr-22948	540	1	data	datum	NOUN
ihlr-22948	540	2	use	use	NOUN
ihlr-22948	540	3	agreements	agreement	NOUN
ihlr-22948	540	4	should	should	AUX
ihlr-22948	540	5	be	be	AUX
ihlr-22948	540	6	developed	develop	VERB
ihlr-22948	540	7	and	and	CCONJ
ihlr-22948	540	8	enforced	enforce	VERB
ihlr-22948	540	9	whenever	whenever	SCONJ
ihlr-22948	540	10	registry	registry	PROPN
ihlr-22948	540	11	data	datum	NOUN
ihlr-22948	540	12	are	be	AUX
ihlr-22948	540	13	made	make	VERB
ihlr-22948	540	14	available	available	ADJ
ihlr-22948	540	15	to	to	ADP
ihlr-22948	540	16	entities	entity	NOUN
ihlr-22948	540	17	outside	outside	ADP
ihlr-22948	540	18	of	of	ADP
ihlr-22948	540	19	the	the	DET
ihlr-22948	540	20	registry	registry	NOUN
ihlr-22948	540	21	.	.	PUNCT
ihlr-22948	541	1	security	security	NOUN
ihlr-22948	541	2	risk	risk	NOUN
ihlr-22948	541	3	assessments	assessment	NOUN
ihlr-22948	541	4	are	be	AUX
ihlr-22948	541	5	also	also	ADV
ihlr-22948	541	6	imperative	imperative	ADJ
ihlr-22948	541	7	for	for	ADP
ihlr-22948	541	8	many	many	ADJ
ihlr-22948	541	9	registries	registry	NOUN
ihlr-22948	541	10	.	.	PUNCT
ihlr-22948	542	1	transparency	transparency	NOUN
ihlr-22948	542	2	about	about	ADP
ihlr-22948	542	3	registry	registry	NOUN
ihlr-22948	542	4	policies	policy	NOUN
ihlr-22948	542	5	and	and	CCONJ
ihlr-22948	542	6	data	datum	NOUN
ihlr-22948	542	7	uses	use	NOUN
ihlr-22948	542	8	are	be	AUX
ihlr-22948	542	9	also	also	ADV
ihlr-22948	542	10	essential	essential	ADJ
ihlr-22948	542	11	.	.	PUNCT
ihlr-22948	543	1	transparency	transparency	NOUN
ihlr-22948	543	2	should	should	AUX
ihlr-22948	543	3	also	also	ADV
ihlr-22948	543	4	include	include	VERB
ihlr-22948	543	5	allowing	allow	VERB
ihlr-22948	543	6	registry	registry	NOUN
ihlr-22948	543	7	participants	participant	NOUN
ihlr-22948	543	8	to	to	PART
ihlr-22948	543	9	know	know	VERB
ihlr-22948	543	10	what	what	PRON
ihlr-22948	543	11	102	102	NUM
ihlr-22948	543	12	.	.	PUNCT
ihlr-22948	544	1	agency	agency	NOUN
ihlr-22948	544	2	for	for	ADP
ihlr-22948	544	3	healthcare	healthcare	PROPN
ihlr-22948	544	4	research	research	PROPN
ihlr-22948	544	5	&	&	CCONJ
ihlr-22948	544	6	quality	quality	NOUN
ihlr-22948	544	7	,	,	PUNCT
ihlr-22948	544	8	supra	supra	ADJ
ihlr-22948	544	9	note	note	NOUN
ihlr-22948	544	10	1	1	NUM
ihlr-22948	544	11	.	.	NOUN
ihlr-22948	544	12	2018	2018	NUM
ihlr-22948	544	13	]	]	PUNCT
ihlr-22948	544	14	patient	patient	ADJ
ihlr-22948	544	15	registries	registry	NOUN
ihlr-22948	544	16	and	and	CCONJ
ihlr-22948	544	17	their	their	PRON
ihlr-22948	544	18	governance	governance	NOUN
ihlr-22948	544	19	65	65	NUM
ihlr-22948	544	20	information	information	NOUN
ihlr-22948	544	21	the	the	DET
ihlr-22948	544	22	registry	registry	NOUN
ihlr-22948	544	23	holds	hold	VERB
ihlr-22948	544	24	about	about	ADP
ihlr-22948	544	25	them	they	PRON
ihlr-22948	544	26	and	and	CCONJ
ihlr-22948	544	27	to	to	PART
ihlr-22948	544	28	suggest	suggest	VERB
ihlr-22948	544	29	any	any	DET
ihlr-22948	544	30	needed	need	VERB
ihlr-22948	544	31	corrections	correction	NOUN
ihlr-22948	544	32	.	.	PUNCT
ihlr-22948	545	1	regular	regular	ADJ
ihlr-22948	545	2	communication	communication	NOUN
ihlr-22948	545	3	with	with	ADP
ihlr-22948	545	4	registry	registry	NOUN
ihlr-22948	545	5	participants	participant	NOUN
ihlr-22948	545	6	—	—	PUNCT
ihlr-22948	545	7	for	for	ADP
ihlr-22948	545	8	example	example	NOUN
ihlr-22948	545	9	,	,	PUNCT
ihlr-22948	545	10	in	in	ADP
ihlr-22948	545	11	the	the	DET
ihlr-22948	545	12	form	form	NOUN
ihlr-22948	545	13	of	of	ADP
ihlr-22948	545	14	an	an	DET
ihlr-22948	545	15	electronically	electronically	ADV
ihlr-22948	545	16	available	available	ADJ
ihlr-22948	545	17	annual	annual	ADJ
ihlr-22948	545	18	report	report	NOUN
ihlr-22948	545	19	—	—	PUNCT
ihlr-22948	545	20	could	could	AUX
ihlr-22948	545	21	greatly	greatly	ADV
ihlr-22948	545	22	enhance	enhance	VERB
ihlr-22948	545	23	awareness	awareness	NOUN
ihlr-22948	545	24	of	of	ADP
ihlr-22948	545	25	registry	registry	NOUN
ihlr-22948	545	26	activities	activity	NOUN
ihlr-22948	545	27	for	for	ADP
ihlr-22948	545	28	participants	participant	NOUN
ihlr-22948	545	29	.	.	PUNCT
ihlr-22948	546	1	these	these	DET
ihlr-22948	546	2	measures	measure	NOUN
ihlr-22948	546	3	have	have	VERB
ihlr-22948	546	4	the	the	DET
ihlr-22948	546	5	potential	potential	NOUN
ihlr-22948	546	6	to	to	PART
ihlr-22948	546	7	enhance	enhance	VERB
ihlr-22948	546	8	trust	trust	NOUN
ihlr-22948	546	9	among	among	ADP
ihlr-22948	546	10	registry	registry	NOUN
ihlr-22948	546	11	participants	participant	NOUN
ihlr-22948	546	12	and	and	CCONJ
ihlr-22948	546	13	encourage	encourage	VERB
ihlr-22948	546	14	engagement	engagement	NOUN
ihlr-22948	546	15	with	with	ADP
ihlr-22948	546	16	the	the	DET
ihlr-22948	546	17	registry	registry	NOUN
ihlr-22948	546	18	.	.	PUNCT
ihlr-22948	547	1	registries	registry	NOUN
ihlr-22948	547	2	are	be	AUX
ihlr-22948	547	3	a	a	DET
ihlr-22948	547	4	growing	grow	VERB
ihlr-22948	547	5	part	part	NOUN
ihlr-22948	547	6	of	of	ADP
ihlr-22948	547	7	the	the	DET
ihlr-22948	547	8	health	health	NOUN
ihlr-22948	547	9	information	information	NOUN
ihlr-22948	547	10	landscape	landscape	NOUN
ihlr-22948	547	11	and	and	CCONJ
ihlr-22948	547	12	an	an	DET
ihlr-22948	547	13	important	important	ADJ
ihlr-22948	547	14	source	source	NOUN
ihlr-22948	547	15	of	of	ADP
ihlr-22948	547	16	information	information	NOUN
ihlr-22948	547	17	,	,	PUNCT
ihlr-22948	547	18	particularly	particularly	ADV
ihlr-22948	547	19	about	about	ADP
ihlr-22948	547	20	rare	rare	ADJ
ihlr-22948	547	21	conditions	condition	NOUN
ihlr-22948	547	22	.	.	PUNCT
ihlr-22948	548	1	further	further	ADJ
ihlr-22948	548	2	research	research	NOUN
ihlr-22948	548	3	on	on	ADP
ihlr-22948	548	4	registry	registry	NOUN
ihlr-22948	548	5	practices	practice	NOUN
ihlr-22948	548	6	and	and	CCONJ
ihlr-22948	548	7	on	on	ADP
ihlr-22948	548	8	the	the	DET
ihlr-22948	548	9	attitudes	attitude	NOUN
ihlr-22948	548	10	and	and	CCONJ
ihlr-22948	548	11	experiences	experience	NOUN
ihlr-22948	548	12	of	of	ADP
ihlr-22948	548	13	registry	registry	NOUN
ihlr-22948	548	14	participants	participant	NOUN
ihlr-22948	548	15	is	be	AUX
ihlr-22948	548	16	needed	need	VERB
ihlr-22948	548	17	both	both	PRON
ihlr-22948	548	18	to	to	PART
ihlr-22948	548	19	reduce	reduce	VERB
ihlr-22948	548	20	risks	risk	NOUN
ihlr-22948	548	21	for	for	ADP
ihlr-22948	548	22	participants	participant	NOUN
ihlr-22948	548	23	and	and	CCONJ
ihlr-22948	548	24	to	to	PART
ihlr-22948	548	25	further	further	VERB
ihlr-22948	548	26	registry	registry	NOUN
ihlr-22948	548	27	development	development	NOUN
ihlr-22948	548	28	.	.	PUNCT