UConn Health and Jackson Lab launch Connecticut's first endometriosis biorepository program

In a pivotal meeting held by the Connecticut General Assembly's Appropriations Committee, experts from UConn Health and Jackson Laboratory presented groundbreaking initiatives aimed at tackling endometriosis, a debilitating condition affecting one in ten female-born individuals. The discussion highlighted the urgent need for awareness, education, and research surrounding this often-misunderstood disease, which can take years to diagnose and has significant health implications.

Dr. Daniel, interim chair of the Department of OB GYN at UConn Health and co-director of the EndoRISE program, opened the session by shedding light on the staggering statistics surrounding endometriosis. With an average diagnosis age of 27, many individuals suffer for nearly a decade before receiving proper care. The financial burden of managing this condition in the U.S. exceeds $20 billion annually, underscoring the critical need for effective solutions.

In response to these challenges, the Connecticut legislature passed Public Act 23-67 in 2023, which mandates the establishment of a multi-institution endometriosis biorepository. This initiative aims to enhance public and provider awareness while fostering research to improve clinical management of the disease. Dr. Daniel expressed gratitude for the enthusiastic participation of patients, noting that 52 individuals have already enrolled in the program, eager to contribute to a cause that could spare future generations from similar suffering.

Dr. Elise Courtois, also a co-director of EndoRISE, elaborated on the program's progress, revealing that the biorepository now holds over 2,000 biospecimens and clinical data. This unique resource is expected to drive significant discoveries in early detection and treatment strategies. The initiative has garnered attention from various funding entities, attracting both public and private support, including a Congressionally Directed Spending Award.

As the program moves forward, it aims to expand its reach across Connecticut, ensuring diverse representation in its biospecimen collection. However, Dr. Courtois cautioned that while the governor's budget reflects a commitment to this initiative, it does not fully address the additional funding needed to meet the legislative goals of population equity and public awareness.

The meeting concluded with a sense of optimism and urgency, as both doctors emphasized the importance of combining research with education to improve outcomes for those affected by endometriosis. Their commitment to advancing this cause not only highlights the pressing need for action but also positions Connecticut as a leader in women's health initiatives. As the EndoRISE program continues to grow, it promises to bring hope and support to countless individuals navigating the challenges of this complex disease.