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 interim 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.

The nation’s first public, multi-institution biorepository

A proposed endometriosis data and biorepository program would be 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

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

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

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Elise Courtois, endometriosis research, The Jackson Laboratory

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