Document Type
Article
Publication Date
1-1-2026
Original Citation
Courtois E,
Roy L,
Uvalic J,
Mullaj K,
Lockshire D,
Luciano D.
Legislating infrastructure: a state-level model to accelerate endometriosis research and women's health equity. Front Reprod Health. 2026;8:1918764
Keywords
JGM
JAX Source
Front Reprod Health. 2026;8:1918764
ISSN
2673-3153
PMID
42662543
DOI
https://doi.org/10.3389/frph.2026.1918764
Abstract
Impact statement: A legislatively mandated, statewide endometriosis biorepository integrated within a multidisciplinary endometriosis focused program demonstrates how policy-driven infrastructure can integrate education, clinical care, harmonized biobanking, and translational research to address persistent gaps in women's health in the long term. The Connecticut Endometriosis Working Group (EWG), a group of legislators, researchers, patients, health care providers, and advocates, was established in 2021. The EWG met monthly to discuss strategies to address endometriosis and propose endometriosis specific legislation which has been a turning point. Public Acts 22-33 and 23-67 directed the establishment, governance, and annual reporting of a coordinated endometriosis data and biorepository program, making Connecticut the first state in the US to pass endometriosis focused legislation, unanimously. The resulting program-EndoRISE, (Endometriosis Research, Innovation, Support and Education) is structured as a public, multi-institutional infrastructure platform linking clinical phenotyping, biospecimen banking, molecular profiling, education, public awareness, and policy engagement. On May 14, 2026, HB5514 was passed making the Endometriosis Working Group a legislatively established working group under the administration of the Committee on Women, Children, Seniors, Equity, and Opportunity. This initiative provides an opportunity to examine whether state-level policy mechanisms can meaningfully influence research capacity in women's health and particularly address disregarded and underappreciated chronic and systemic female conditions such as endometriosis.
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