Researcher: ND Page 1 3/14/23
OLR Bill Analysis
sHB 6672
AN ACT CONCERNING ENDOMETRIOSIS.
SUMMARY
This bill requires UConn Health Center, by January 1, 2024, and in
collaboration with a research laboratory, to develop an endometriosis
data and biorepository program to enable and promote research on (1)
early detection of endometriosis in adolescents and adults and (2) the
development of therapeutic strategies to improve clinical management
of the condition.
The bill also establishes a 16-member Endometriosis Data and
Biorepository Program Oversight Committee within the Legislative
Department to do the following:
1. oversee the program’s governance and operation;
2. develop processes and guidelines for scientific review of the
program’s research projects and data-sharing processes; and
3. ensure the integrity of, and facilitate access to and distribution of,
the program’s data and biorepository specimens.
Under the bill, the oversight committee must annually report on the
program to the Public Health Committee, starting by January 1, 2025.
EFFECTIVE DATE: July 1, 2023
ENDOMETRIOSIS DATA A ND BIOREPOSITORY PRO GRAM
Duties
Under the bill, the endometriosis data and biorepository program
must do the following:
1. design a comprehensive longitudinal sample and clinical data 2023HB-06672-R000059-BA.DOCX
Researcher: ND Page 2 3/14/23
collection protocol to characterize endometriosis and cellular
functions of those with endometriosis;
2. collect from patients with endometriosis and control patients
without the condition and code (a) endometrial tissue specimens;
(b) fluids, including blood and urine; and (c) clinical and
demographic data and questionnaires on endometriosis
symptoms and quality of life;
3. develop standard operating procedures for biological material
samples, including for their transportation, coding, processing,
and long-term retention and storage;
4. establish data transmission and onboarding operations necessary
for institutions in the state to participate in banking with and
accessing data from the program;
5. curate biological endometriosis samples from a diverse cross-
section of communities in the state to ensure they represent all
groups affected by endometriosis, including African American,
black, Latino, Latina, Latinx, and Puerto Rican persons; other
persons of color; transgender and gender diverse persons; and
persons with disabilities;
6. raise awareness on endometriosis in these underrepresented
populations and promote research on better diagnostic and
therapeutic options, including through communications with
health care providers and those impacted by endometriosis on
information about the latest therapeutic options for people
diagnosed with the condition;
7. create opportunities for collaborative research among
institutions in the state focused on the pathogenesis,
pathophysiology, progression, prognosis, and prevention of
endometriosis and the discovery of noninvasive diagnostic
biomarkers, new targeted therapeutics, and improved medical
and surgical interventions; 2023HB-06672-R000059-BA.DOCX
Researcher: ND Page 3 3/14/23
8. serve as a centralized resource for endometriosis information and
a conduit to promote endometriosis education and raise its
public awareness;
9. facilitate collaboration among researchers and health care
providers, educators, students, patients, and others impacted by
endometriosis through conferences and continuing medical
education programs on best practices for endometriosis
diagnosis, care, and treatment;
10. collect information on endometriosis’s impact on Connecticut
residents, including health and comorbidity, health care costs,
and overall quality of life; and
11. apply for and accept grants, gifts, and funds bequested to
perform its functions.
Definitions
Under the bill, “biorepository” means a facility that collects, catalogs,
and stores human samples of biological material, including urine, blood,
tissue, cells, DNA, RNA, and protein for laboratory research. These
samples are coded without individual identifiers and linked with
phenotypic data.
“Phenotypic data” means non-individually identifiable clinical
information on a person’s disease history and symptoms and his or her
demographic data, including age, sex, race, and ethnicity.
ENDOMETRIOSIS DATA AND BIOREPOSITORY PROGRAM
OVERSIGHT COMMITTEE
Membership
Under the bill, committee members include the following
individuals:
1. the chairpersons and ranking members of the Public Health
Committee, or their designees;
2. two members each appointed by the House speaker and Senate 2023HB-06672-R000059-BA.DOCX
Researcher: ND Page 4 3/14/23
president pro tempore;
3. one member each appointed by the House and Senate majority
and minority leaders;
4. the Department of Public Health (DPH) commissioner, or her
designee;
5. the Office of Health Strategy executive director, or her designee;
6. the healthcare advocate, or his designee; and
7. the Commission on Women, Children, Seniors, Equity and
Opportunity executive director, or his designee.
Under the bill, appointed members may be legislators, and
appointing authorities must fill any vacancies. Committee members are
not compensated but may be reimbursed for necessary expenses
incurred in performing their duties.
Leadership and Meetings
Under the bill, the committee co-chairpersons are (1) the DPH
commissioner, or her designee, and (2) a legislator jointly selected by the
House speaker and Senate president pro tempore from among the
committee members.
The co-chairpersons must schedule the first meeting, which must be
held by September 1, 2023.
COMMITTEE ACTION
Public Health Committee
Joint Favorable Substitute
Yea 35 Nay 0 (03/03/2023)