The federal government gave only $13 million to endometriosis research in 2019, despite 1 in 10 US women having the disease. This equates to less than $1 per year for each diagnosed patient. Although the disease continues to be critically underfunded, there have been some recent victories.
Ie-Ming Shih, MD, Ph.D., is the Richard TeLinde Distinguished Professor of Gynecologic Pathology at the Johns Hopkins University School of Medicine. When Dr. Shih recognized the need for high impact research for endometriosis, he applied his training in gynecologic pathology and cancer molecular genetics to conduct endometriosis research. In 2017-2018, Dr. Shih and his team at Johns Hopkins received a grant from EndoFound to pursue cancer-associated mutations in endometriosis. EndoFound funding is critical to providing seed funding which then paves the way for larger grants. Dr. Shih highlighted that “we really appreciate this kind of support from EndoFound to generate critical preliminary results in order for us to compete for NIH grants to study further about endo.” These small grants continue to be of high importance to researchers in the field of endo, where federal funding is limited.
Dr. Shih and his team’s research revealed that deep-infiltrating endometriosis (DIE) harbors somatic cancer-associated mutations. They published their significant results in a high-impact and competitive journal, The New England Journal of Medicine. The publication of the article, Cancer-Associated Mutation in Endometriosis without Cancer, inspired them to collaborate with other researchers to apply for an NIH grant.
EndoFound’s grant to Dr. Shih and his team totaled $25,000. This grant had an exponential effect by helping Dr. Shih and Dr. Segars to successfully secure a research grant from the NIH to study the pathogenesis of endometriosis for approximately $3.5 million in July 2019. Dr. Segars is the director of the Division of Reproductive Science and Women’s Health Research and a professor in the Johns Hopkins Department of Gynecology and Obstetrics. He leads the Howard and Georgeanna Seegar Jones Reproductive Endocrinology Laboratory and oversees all research in the department. The co-investigators in this grant include Dr. Hugh Taylor at Yale School of Medicine and Dr. Kevin Osteen at Vanderbilt University Medical Center, reflecting a highly collaborative nature in endometriosis team research. Collaboration between researchers, institutions, and funders is critical to the advancement of endometriosis research.
Dr. Shih is excited for this award of over $3 million, and hopes it will result in better diagnosis and treatment for women with endometriosis. “This NIH grant,” Dr. Shih says, “is made possible at least in part by the continuous kind support from EndoFound that enabled researchers to generate the preliminary results that were used to successfully compete for this grant. All the researchers in this grant express their sincere gratitude for the foundation and all the EndoFound donors who make this possible.”
Deniz Kocas is Research Advisor at EndoFound and a Doctoral Candidate in Clinical Psychology at The New School. She has a background in pharmacology and health policy, and has worked within the National Health Service in England and the pharmaceutical sector in Belgium and Turkey.