Endometriosis Research

Endometriosis research at JAX is improving the lives of those impacted by the disease – from seeking to develop early detection with genetic testing to understanding the development of the condition at a single cell level.

ENDORise Members standing in a line

Members of the EndoRISE team, L-R: Kayceety Mullaj, EndoRISE research coordinator and clinical research assistant at UConn Health; Jasmina Kuljancic, program manager at EndoRISE and JAX; Lisa Roy, director, government and community relations, JAX; Elise Courtois, Ph.D., EndoRISE co-director and director of Single Cell Biology at JAX; Danielle Luciano, M.D., EndoRISE co-director and associate professor of obstetrics and gynecology and minimally invasive gynecologic surgeon, UConn Health.

EndoRISE goals

Courtois and program co-director, Danielle Luciano, M.D., associate professor of obstetrics and gynecology and director of the Center of Excellence in Minimally Invasive Gynecologic Surgery at UConn Health, support EndoRISE by leveraging their extensive expertise in the research lab, in the operating room and in the classroom. Together, they work to positively change the lives of nearly 200 million individuals impacted by the condition worldwide. 

The program is already making progress with the establishment of the first public, multi-institution biorepository of its kind, fueling Courtois’ work alongside JAX’s unparalleled research capabilities. Further blossoming branches of the program - like endometriosis education training for school nurses and patient support and advocacy groups - hold promise for the realization of the ultimate program goal: improve health outcomes for those affected by this highly invasive, underdiagnosed and under-researched condition.

Biorepository description in graphic form. A primary circular base with the spokes of each piece branching off.

Passing the bill

Many steps were taken to create this first-of-its-kind endometriosis data and biorepository program to bring greater awareness, action and care options to those suffering from the condition. Early actions – like JAX’s $2,500 donation in 2022 to Endo Collective’s Endo What? School Nurse initiative to support the distribution of 100 educational resource toolkits to school nurses in Connecticut – aimed to educate frontline providers such as school nurses, pediatricians and primary care providers to diagnose and address endometriosis earlier. 

The Endometriosis Working Group held their first meeting in 2021. They championed bringing greater awareness to providers and the public, as well as further research and innovation for diagnosis and treatment for the disease. A press release from Gilchrest’s office shared that the biorepository program plan was submitted to the Connecticut Legislature’s Public Health Committee and another outlined the 2022 policy recommendations from the group.

On February 22, 2023, Courtois and 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.

On May 10, 2023 the House of Representatives unanimously passed House Bill 6672, “An Act Concerning Endometriosis,” advancing the CT Endometriosis Working Group’s recommendation for an endometriosis data and biorepository program in Connecticut. A summary of the legislation can be found here.

On June 6, 2023 HB 6672, “An Act Concerning Endometriosis,” unanimously passed the Connecticut State Senate. Read the press release here.

The EndoRISE program officially launched in 2024 and a new chapter began. For more information about EndoRISE and how to get involved, please visit the program website at endorise.org.