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.
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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.
One in 10 women are affected by endometriosis – a condition that can cause debilitating pain and infertility. Current knowledge for diagnosis, causes, and treatments of the condition is limited, but JAX is working to change that.
JAX is the home base for endometriosis researcher Elise Courtois, Ph.D., director of Single Cell Biology. In 2023, JAX collaborated with UConn Health (an endometriosis reference center and recognized leader in women’s health), and the state of Connecticut (via Rep. Jillian Gilchrest’s Endometriosis Working Group) to establish EndoRISE – a program dedicated to research, innovation, patient support and education to improve the lives of individuals impacted by endometriosis.
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.
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.
Connecticut is poised to become a hub for endometriosis research and innovation following the unanimous passage of House Bill 6672, “An Act Concerning Endometriosis,” which creates a first-of-its-kind endometriosis data and biorepository program to bring greater awareness, action and care options to those suffering from the condition.
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An early screening of a new film, “Below the Belt," took place March 7 at The Jackson Laboratory’s Farmington, Conn. campus. Directed by award-winning filmmaker, attorney, social movement builder and endometriosis patient Shannon Cohn, the film sheds light on endometriosis, an understudied and underfunded disease, and the many challenges it poses to patients, family members and providers.
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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 endometriosis, which can cause debilitating pain and infertility in women.
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