Connecticut 2023 Regular Session

Connecticut House Bill HB06672 Compare Versions

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	7	+	General Assembly Substitute Bill No. 6672
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4		-	Substitute House Bill No. 6672
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6		-	Public Act No. 23-67
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9	14		AN ACT CONCERNING ENDOMETRIOSIS.
10	15		Be it enacted by the Senate and House of Representatives in General
11	16		Assembly convened:
12	17
13		-	Section 1. (NEW) (Effective July 1, 2023) (a) As used in this section:
14		-	(1) "Biorepository" means a facility that, for laboratory research,
15		-	collects, catalogs and stores samples of biological material from humans,
16		-	including, but not limited to, urine, blood, tissue, cells, DNA
17		-	(deoxyribonucleic acid), RNA (ribonucleic acid) and protein, that is
18		-	coded without individual identifiers and linked with phenotypic data;
19		-	and
20		-	(2) "Phenotypic data" means clinical information about a person,
21		-	coded without individual identifiers, that includes disease history,
22		-	symptoms and demographic data including, but not limited to, age, sex,
23		-	race and ethnicity.
24		-	(b) Not later than January 1, 2024, The University of Connecticut
25		-	Health Center, in collaboration with ~~an independent~~, ~~nonprofit~~
26		-	~~biomedical research institution~~ in the ~~state engaged in endometriosis~~
27		-	research ~~with said health center,~~ ~~shall establish an endometriosis data~~
28		-	~~and biorepository program~~ in ~~the state to enable~~ and ~~promote research~~
29		-	~~regarding (1) early detection~~ of endometriosis ~~in adolescents and adults,~~ Substitute ~~House~~ Bill No. 6672
	18	+	Section 1. (NEW) (Effective July 1, 2023) (a) As used in this section: 1
	19	+	(1) "Biorepository" means a facility that, for laboratory research, 2
	20	+	collects, catalogs and stores samples of biological material from humans, 3
	21	+	including, but not limited to, urine, blood, tissue, cells, DNA 4
	22	+	(deoxyribonucleic acid), RNA (ribonucleic acid) and protein, that is 5
	23	+	coded without individual identifiers and linked with phenotypic data; 6
	24	+	and 7
	25	+	(2) "Phenotypic data" means clinical information about a person, 8
	26	+	coded without individual identifiers, that includes disease history, 9
	27	+	symptoms and demographic data including, but not limited to, age, sex, 10
	28	+	race and ethnicity. 11
	29	+	(b) Not later than January 1, 2024, The University of Connecticut 12
	30	+	Health Center, in collaboration with a research laboratory in the state, 13
	31	+	shall establish an endometriosis data and biorepository program in the 14
	32	+	state to enable and promote research regarding (1) early detection of 15
	33	+	endometriosis in adolescents and adults, and (2) the development of 16
	34	+	therapeutic strategies to improve clinical management of endometriosis. 17 Substitute Bill No. 6672
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31		-	Public Act No. 23-67 2 of 3
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33		-	and (2) the development of therapeutic strategies to improve clinical
34		-	management of endometriosis.
35		-	(c) The endometriosis data and biorepository program established
36		-	pursuant to subsection (b) of this section shall:
37		-	(1) (A) Design a comprehensive longitudinal sample and clinical data
38		-	collection protocol to characterize endometriosis and cellular functions
39		-	of individuals with endometriosis, and (B) collect from patients with
40		-	endometriosis and control patients without endometriosis and code (i)
41		-	endometrial tissue specimens, (ii) fluids, including, but not limited to,
42		-	blood and urine, and (iii) clinical and demographic data and
43		-	questionnaires regarding symptoms of endometriosis and quality of life;
44		-	(2) (A) Develop standard operating procedures concerning samples
45		-	of biological material, including, but not limited to, transportation,
46		-	coding, processing, long-term retention and storage of such samples,
47		-	and (B) establish data transmission and onboarding operations
48		-	necessary for institutions in the state to participate in banking with and
49		-	accessing data from the data and biorepository program;
50		-	(3) Curate biological samples of endometriosis from a diverse cross-
51		-	section of communities in the state to ensure representation of all groups
52		-	affected by endometriosis, including such under-represented
53		-	populations as African American and black persons, Latino, Latina and
54		-	Latinx persons, Puerto Rican persons, other persons of color,
55		-	transgender and gender diverse persons, and persons with disabilities;
56		-	(4) Raise awareness regarding endometriosis in such under-
57		-	represented populations and promote research of better diagnostic and
58		-	therapeutic options, including through communications with health
59		-	care providers and persons impacted by endometriosis concerning
60		-	information about the latest therapeutic options for persons diagnosed
61		-	with endometriosis; Substitute House Bill No. 6672
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63		-	Public Act No. 23-67 3 of 3
	41	+	(c) The endometriosis data and biorepository program established 18
	42	+	pursuant to subsection (b) of this section shall: 19
	43	+	(1) (A) Design a comprehensive longitudinal sample and clinical data 20
	44	+	collection protocol to characterize endometriosis and cellular functions 21
	45	+	of individuals with endometriosis, and (B) collect from patients with 22
	46	+	endometriosis and control patients without endometriosis and code (i) 23
	47	+	endometrial tissue specimens, (ii) fluids, including, but not limited to, 24
	48	+	blood and urine, and (iii) clinical and demographic data and 25
	49	+	questionnaires regarding symptoms of endometriosis and quality of life; 26
	50	+	(2) (A) Develop standard operating procedures concerning samples 27
	51	+	of biological material, including, but not limited to, transportation, 28
	52	+	coding, processing, long-term retention and storage of such samples, 29
	53	+	and (B) establish data transmission and onboarding operations 30
	54	+	necessary for institutions in the state to participate in banking with and 31
	55	+	accessing data from the data and biorepository program; 32
	56	+	(3) Curate biological samples of endometriosis from a diverse cross-33
	57	+	section of communities in the state to ensure representation of all groups 34
	58	+	affected by endometriosis, including such under -represented 35
	59	+	populations as African American and black persons, Latino, Latina and 36
	60	+	Latinx persons, Puerto Rican persons, other persons of color, 37
	61	+	transgender and gender diverse persons, and persons with disabilities; 38
	62	+	(4) Raise awareness regarding endometriosis in such under-39
	63	+	represented populations and promote research of better diagnostic and 40
	64	+	therapeutic options, including through communications with health 41
	65	+	care providers and persons impacted by endometriosis concerning 42
	66	+	information about the latest therapeutic options for persons diagnosed 43
	67	+	with endometriosis; 44
	68	+	(5) Create opportunities for collaborative research among institutions 45
	69	+	in the state focused on the pathogenesis, pathophysiology, progression, 46
	70	+	prognosis and prevention of endometriosis and the discovery of 47
	71	+	noninvasive diagnostic biomarkers, novel targeted therapeutics and 48 Substitute Bill No. 6672
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65		-	(5) Create opportunities for collaborative research among institutions
66		-	in the state focused on the pathogenesis, pathophysiology, progression,
67		-	prognosis and prevention of endometriosis and the discovery of
68		-	noninvasive diagnostic biomarkers, novel targeted therapeutics and
69		-	improved medical and surgical interventions;
70		-	(6) Serve as a centralized resource for endometriosis information and
71		-	a conduit to promote education and raise public awareness regarding
72		-	endometriosis;
73		-	(7) Facilitate collaboration among researchers and health care
74		-	providers, educators, students, patients and other individuals impacted
75		-	by endometriosis through conferences and continuing medical
76		-	education programs regarding best practices for the diagnosis, care and
77		-	treatment of endometriosis;
78		-	(8) Collect information on the impact of endometriosis on residents
79		-	of the state, including, but not limited to, its impact on health and
80		-	comorbidity, health care costs and overall quality of life; and
81		-	(9) Apply for and accept grants, gifts and bequests of funds for the
82		-	purpose of performing its functions pursuant to subdivisions (1) to (8),
83		-	inclusive, of this subsection.
84		-	(d) Not later than January 1, 2025, and annually thereafter, The
85		-	University of Connecticut Health Center shall report, in accordance with
86		-	the provisions of section 11-4a of the general statutes, to the joint
87		-	standing committee of the General Assembly having cognizance of
88		-	matters relating to public health, regarding the implementation of the
89		-	endometriosis data and biorepository program established pursuant to
90		-	subsection (b) of this section.
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	78	+	improved medical and surgical interventions; 49
	79	+	(6) Serve as a centralized resource for endometriosis information and 50
	80	+	a conduit to promote education and raise public awareness regarding 51
	81	+	endometriosis; 52
	82	+	(7) Facilitate collaboration among researchers and health care 53
	83	+	providers, educators, students, patients and other individuals impacted 54
	84	+	by endometriosis through conferences and continuing medical 55
	85	+	education programs regarding best practices for the diagnosis, care and 56
	86	+	treatment of endometriosis; 57
	87	+	(8) Collect information on the impact of endometriosis on residents 58
	88	+	of the state, including, but not limited to, its impact on health and 59
	89	+	comorbidity, health care costs and overall quality of life; and 60
	90	+	(9) Apply for and accept grants, gifts and bequests of funds for the 61
	91	+	purpose of performing its functions pursuant to subdivisions (1) to (8), 62
	92	+	inclusive, of this subsection. 63
	93	+	Sec. 2. (NEW) (Effective July 1, 2023) (a) There is established an 64
	94	+	Endometriosis Data and Biorepository Program Oversight Committee 65
	95	+	to (1) oversee the governance and operation of the endometriosis data 66
	96	+	and biorepository program established pursuant to section 1 of this act, 67
	97	+	(2) develop processes and guidelines for scientific review of research 68
	98	+	projects and data-sharing processes within such program, (3) ensure the 69
	99	+	integrity of data and biorepository specimens within such program, and 70
	100	+	(4) facilitate access to and distribution of data and biorepository 71
	101	+	specimens within such program. The committee shall be within the 72
	102	+	Legislative Department. 73
	103	+	(b) The committee shall consist of the following members: 74
	104	+	(1) The chairpersons and ranking members of the joint standing 75
	105	+	committee of the General Assembly having cognizance of matters 76
	106	+	relating to public health, or their designees; 77 Substitute Bill No. 6672
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	113	+	(2) Two appointed by the speaker of the House of Representatives; 78
	114	+	(3) Two appointed by the president pro tempore of the Senate; 79
	115	+	(4) One appointed by the majority leader of the House of 80
	116	+	Representatives; 81
	117	+	(5) One appointed by the majority leader of the Senate; 82
	118	+	(6) One appointed by the minority leader of the House of 83
	119	+	Representatives; 84
	120	+	(7) One appointed by the minority leader of the Senate; 85
	121	+	(8) The Commissioner of Public Health, or the commissioner's 86
	122	+	designee; 87
	123	+	(9) The executive director of the Office of Health Strategy, or the 88
	124	+	executive director's designee; 89
	125	+	(10) The Healthcare Advocate, or the Healthcare Advocate's 90
	126	+	designee; and 91
	127	+	(11) The executive director of the Commission on Women, Children, 92
	128	+	Seniors, Equity and Opportunity, or the executive director's designee. 93
	129	+	(c) Any member of the committee appointed under subdivisions (1) 94
	130	+	to (7), inclusive, of subsection (b) of this section may be a member of the 95
	131	+	General Assembly. 96
	132	+	(d) Any vacancy shall be filled by the appointing authority. 97
	133	+	(e) The Commissioner of Public Health, or the commissioner's 98
	134	+	designee, and a member of the General Assembly selected jointly by the 99
	135	+	speaker of the House of Representatives and the president pro tempore 100
	136	+	of the Senate from among the members serving pursuant to subdivision 101
	137	+	(1) of subsection (b) of this section shall be cochairpersons of the 102
	138	+	committee. Such cochairpersons shall schedule the first meeting of the 103 Substitute Bill No. 6672
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	145	+	committee, which shall be held not later September 1, 2023. 104
	146	+	(f) Members of the committee shall serve without compensation, 105
	147	+	except for necessary expenses incurred in the performance of their 106
	148	+	duties. 107
	149	+	(g) Not later than January 1, 2025, and annually thereafter, the 108
	150	+	committee shall report, in accordance with section 11-4a of the general 109
	151	+	statutes, to the joint standing committee of the General Assembly 110
	152	+	having cognizance of matters relating to public health regarding the 111
	153	+	endometriosis data and biorepository program. 112
	154	+	This act shall take effect as follows and shall amend the following
	155	+	sections:
	156	+
	157	+	Section 1 July 1, 2023 New section
	158	+	Sec. 2 July 1, 2023 New section
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	160	+	PH Joint Favorable Subst.
	161	+	APP Joint Favorable
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