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OLR Bill Analysis
sHB 6672 (as amended by House “A”)*
AN ACT CONCERNING ENDOMETRIOSIS.
SUMMARY
This bill requires UConn Health Center (UCHC), by January 1, 2024,
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. It must do this in
collaboration with an independent, nonprofit biomedical research
institution in Connecticut that is engaged in endometriosis research
with UCHC.
Under the bill, UCHC must annually report on the program’s
implementation to the Public Health Committee, starting by January 1,
2025.
*House Amendment “A” (1) removes the provision creating a 16-
member Endometriosis Data and Biorepository Program Oversight
Committee; (2) specifies that the research institution UCHC collaborates
with must be nonprofit and independent, and engaged in endometriosis
research; and (3) requires UCHC, instead of the eliminated oversight
committee, to annually report on the program.
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
collection protocol to characterize endometriosis and cellular
functions of those with endometriosis; 2023HB-06672-R01-BA.DOCX
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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;
8. serve as a centralized resource for endometriosis information and
a conduit to promote endometriosis education and raise its
public awareness; 2023HB-06672-R01-BA.DOCX
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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 bequeathed to
perform its functions.
Under the bill, a “biorepository” is 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 (i.e., non-individually identifiable clinical information
on a person’s disease history, symptoms, and demographic data,
including age, sex, race, and ethnicity).
COMMITTEE ACTION
Public Health Committee
Joint Favorable Substitute
Yea 35 Nay 0 (03/03/2023)
Appropriations Committee
Joint Favorable
Yea 53 Nay 0 (05/01/2023)