Endometriosis Research

Through research and advocacy, JAX and our partners in Connecticut are committed to improving the lives of those impacted by endometriosis.

Endometriosis Research

Although endometriosis affects an estimated one in 10 female-born individuals, little is known about the condition, which can cause debilitating pain and infertility. The Jackson Laboratory is working on multiple efforts related to endometriosis, including advocating for crucial legislation that would increase scientific research and access to care, furthering our cutting-edge work to discover causes and treatments, and amplifying the important effort of others to bring attention and funding to this often misunderstood, underfunded condition.

Elise Courtois, Ph.D., an endometriosis researcher and director of Single Cell Biology at JAX, has dedicated her career to understanding endometriosis. In partnership with Director for the Minimally Invasive Gynecological Surgery, Danielle Luciano, M.D., at UConn Health (which is an endometriosis reference center and recognized leader in women’s health), Courtois has studied tissue samples from endometriosis patients one cell at a time to learn more about the condition and possible treatments. Courtois and Luciano are part of Connecticut state Rep. Jillian Gilchrest’s Endometriosis Working Group, which was established last year to increase awareness of endometriosis and expand access to care. This group’s priorities include creating an endometriosis data and biorepository program – the first public, multi-institution biorepository of its kind – and facilitating endometriosis education training for school nurses.

Contact Us

The endometriosis biorepository program is in development. Please provide your information below should you be interested in getting in touch with someone from the program.

The nation’s first public, multi-institution biorepository

The endometriosis data and biorepository program is the first public, multi-institution biorepository of its kind in the nation. The ultimate goal? To improve awareness of and health outcomes for this highly invasive, underdiagnosed and under researched condition in Connecticut, while driving research breakthroughs for individuals impacted by endometriosis across the nation and beyond. Read the full plan here.

The nation’s first public, multi-institution biorepository

Program Goals

The Endometriosis Data and Biorepository Program would:

Foster basic research and clinical collaborations to help better understand the pathology, drivers and impact of endometriosis;
Allow for curation of information from a diverse cross section of communities to ensure representation of all ethnic groups;
Support identification of condition biomarkers to allow for earlier diagnosis;
Advance new therapeutic strategies and early access for Connecticut residents to therapeutic options as they are developed;
Support better care management of the condition that has an estimated current cost of over $78 billion a year in the United States in healthcare dollars and loss of work/school; and
Serve as a centralized resource to disseminate information, educate the public, and raise awareness in order to promote early detection in adolescents and adults.

Updates

Republican-American, a Connecticut-based news outlet, featured endometriosis prominently in its Life & Arts section in September 2023 including two stories which mentioned the collaboration between JAX and UConn Health. Read more here and here.
Following the announcement that the Connecticut legislature approved a historic endometriosis bill, the news was shared by the following news outlets: UConn Today, CT News Junkie, WTNH, NBC Connecticut, Medical Xpress, and others. In addition, in a Nature news story regarding a new study on endometriosis, Elise Courtois was quoted about her own research. She also mentioned the bill as a way to continue studying the missing pieces surrounding this chronic condition.
On June 6, House Bill 6672, “An Act Concerning Endometriosis,” unanimously passed the Connecticut State Senate. Read the press release here.
On May 10, the House of Representatives unanimously passed HB 6672, “An Act Concerning Endometriosis,” advancing the CT Endometriosis Working Group’s recommendation for an endometriosis data and biorepository program in Connecticut. This program will bring greater awareness to providers and the public, as well as research and innovation for diagnosis and treatment for the disease. The bill is now awaiting action in the Senate. A summary of the legislation can be found here.
On March 6, Elise Courtois and Board Certified Patient Advocate Heather Guidone, program director of the Center for Endometriosis Care, appeared on WFSB to discuss endometriosis research, the Below the Belt film, and the urgent need to improve women’s healthcare.
On March 5, The Yale Daily News reported on the Endometriosis Working Group, the biorepository program and the future of endometriosis advocacy and action in Connecticut.
On Feb. 22, Elise Courtois and Danielle Luciano testified about the endometriosis data and biorepository program at a Connecticut Public Health Committee public hearing. Watch their testimony here, from 6:30 - 7:01.
JAX has made a $2,500 donation to Endo Collective’s Endo What? School Nurse initiative to support the distribution of 100 educational resource toolkits to school nurses in Connecticut. The initiative aims to educate frontline providers such as school nurses, pediatricians and primary care providers so that they can diagnose and address endometriosis earlier – the current average diagnosis takes 10 years.
On Jan. 31, Elise Courtois and Lisa Roy, director of Government and Community Relations for JAX, attended a news conference with Rep. Jillian Gilchrest and members of the Endometriosis Working Group in Hartford to announce the group’s 2023 priorities. Plans include establishing an endometriosis data and biorepository program aimed at collecting surgical, clinical and biological data to help gain greater knowledge of this condition. JAX is working closely with UConn and Gilchrest’s office to ensure that the biorepository becomes a reality and also will work with other partners on efforts to bring greater funding and awareness to this condition.
Press release from Gilchrest’s office shares that the biorepository plan has been submitted to the Connecticut Legislature’s Public Health Committee.
Press release from Gilchrest’s office outlines 2022 policy recommendations.
CT News Junkie reports on the completion of a study on endometriosis led by Courtois.

Learn More

The Jackson Laboratory's Elise Courtois in her office.

Historic endometriosis bill approved by Connecticut legislature

The first-of-its-kind program supports endometriosis patients.

L-R: WFSB-TV host Kara Sundlun,“Below the Belt” director Shannon Cohn, Connecticut state Rep. Jillian Gilchrest, JAX researcher Elise Courtois, Ph.D., UConn Health’s Danielle Luciano, M.D., and Board Certified Patient Advocate Heather Guidone. Photo credit: Cloe Poisson

Expanding endometriosis awareness

The Jackson Laboratory hosted a screening and panel discussion of "Below the Belt," a film which sheds light on endometriosis.

JAX scientist Elise Courtois sitting in front of her computer

Unlocking endometriosis one cell at a time

Elise Courtois, Ph.D., is an endometriosis researcher, but she doesn't know much about the disease. That's because no one knows much about…

What is endometriosis?

Endometriosis is a fairly common gynecological condition that affects two million people with uteruses worldwide. So what is this condition, exactly, and what can be done…

Elise Courtois, endometriosis research, The Jackson Laboratory

JAX researcher lands Department of Defense grant to study endometriosis

Supported by a grant from the U.S. Department of Defense, Elise Courtois is researching the genetic mechanisms …

Investigating endometriosis, cell by cell

Many women worldwide are affected by endometriosis, though there has been relatively little research into causes or possible therapies. Elise…