Elise Courtois, an endometriosis researcher at The Jackson Laboratory
Elise Courtois, Ph.D., an endometriosis researcher at The Jackson Laboratory, is working with UConn Health OB-GYN Dr. Danielle Luciano (not shown) to figure out what causes endometriosis, how to diagnose it faster, and how to treat it. Credit: Contributed photo / The Jackson Laboratory

The state is one step closer to launching a data and repository program that will help researchers better understand endometriosis, a painful condition that affects 200 million female-born individuals across the globe, including 6.5 million in the US and one out of 10 in Connecticut.

Legislators from both the state Senate and House unanimously passed House Bill 6672 – An Act Concerning Endometriosis – which will establish the program by January 1 so researchers can continue their work towards early detection as well as therapies to manage the disease.

The University of Connecticut Health Center has been collaborating with researchers from The Jackson Laboratory (JAX), a nonprofit biomedical research organization, to learn more about endometriosis. Endometriosis can cause debilitating pain and infertility which researchers say is the leading cause of hysterectomies in women of reproductive age. 

The bill, which now awaits the signature of Gov. Ned Lamont, also calls for getting samples from a diverse section of communities, “including such under-represented 38 populations as African American and black persons, Latino, Latina and 39 Latinx persons, Puerto Rican persons, other persons of color, 40 transgender and gender diverse persons, and persons with disabilities.”

JAX endometriosis researcher Elise Courtois, Ph.D and a member of the state’s Endometriosis Working Group  was recently part of a study – published in Nature Cell Biology – which helped her better understand the basics of endometriosis at a single cell level. As part of the study, researchers generated data on more than 122,000 cells across 14 individuals.

While the study revealed important information, Courtois said more work, and many more samples, are needed. 

“Without further investigation, endometriosis will persist as a disease requiring invasive diagnostics, lacking a definitive treatment or cure, and continuing to adversely affect the physical and mental health, as well as the economic potential of up to one in 10 female-born individuals,” Courtois said in a statement. 

The bill would also require raising awareness about endometriosis to underrepresented populations through health care providers, and establish a centralized resource of information that can provide education.

More information will also be collected about the actual impact on the quality of life of a person impacted by endometriosis. The bill would also require that, starting January 1, 2025, that the UConn Health Center will make annual reports of its findings to legislators.