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