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EndoRISE reports growing biorepository, new hospital enrollments and outreach events
Summary
EndoRISE said its biorepository has 148 enrolled participants across 62 Connecticut towns (plus two in Massachusetts), more than 7,500 specimens available for distribution, planned Hartford Hospital onboarding by August 2026, a Yard Goats outreach event Aug. 2 and a NINDS‑hosted workshop planned for late September.
EndoRISE program staff told the Endometriosis Working Group in June that the program’s biorepository and outreach efforts are expanding, with new hospital enrollments, broader specimen distribution and a slate of community and federal engagement planned.
Biorepository growth: "We currently have 148 study participants enrolled with representation from across 62 towns in Connecticut and I believe 2 for Massachusetts," the program manager reported, and said the repository holds more than 7,500 biospecimens available for distribution to researchers. Specimens have been requested by academic labs at the Jackson Laboratory and by private startups; staff said recent distributions included a Boston startup focused on diagnostics and a shipment to Germany.
Hospital onboarding and partnerships: EndoRISE staff said they are enrolling patients from UConn Health and expect Hartford Hospital to finalize IRB protocols and begin enrollment by August 2026. The program is resuming discussions with Nuvance Health (now part of Northwell) to expand geographic reach.
Research and federal engagement: Research co‑director Dr. Elise Courtois described a planned workshop with the National Institute of Neurological Disorders and Stroke (NINDS) on chronic overlapping pain conditions in Rockville, Md., tentatively on Sept. 23. Courtois said including endometriosis in the NINDS program could help diversify funding beyond the NICHD and generate requests for applications (RFAs) that prioritize endometriosis research.
Outreach and events: Patient and community outreach plans include pamphlet distribution to schools (materials in English and Spanish), summer intern research projects, an in‑person patient day tentatively planned for Oct. 17, 2026, and a community tabling opportunity at the Hartford Yard Goats minor‑league baseball game on Sunday, Aug. 2 (1:30 p.m.), where EndoRISE expects to have a table and a scoreboard announcement.
Voices from the meeting: Patient advocate Arlie described a long diagnostic journey: "It took me 24 years to be properly diagnosed with endometriosis," she said, underscoring the patient‑facing need for earlier recognition and better provider education. EndoRISE staff emphasized outreach to schools and community partners to reach younger patients earlier.
Next steps: EndoRISE will continue hospital onboarding efforts, circulate event details for August and October activities, and share finalized plans for the NINDS workshop once dates and programming are confirmed.
Sources: Reporting is based on statements by EndoRISE program staff and researchers at the working group meeting; quoted numbers (participant and specimen counts and tentative dates) were stated by presenters during the June session.
