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Initiative aims to boost visibility, research, and treatment for the painful and poorly understood condition

Written by Meredith Wadman

In April, a team at the Jackson Laboratory for Genomic Medicine in Farmington, Connecticut, began receiving tissue samples as part of a groundbreaking initiative to study endometriosis, an often painful condition in which tissue similar to the uterine lining grows outside of the uterus. The project, which held an official launch event last week, is supported by the first government-mandated spending on endometriosis research in the country. Its researchers have already collected scores of samples from more than a dozen patients who recently received treatment at the neighboring UConn Health and consented to donate their tissue for storage and study. The hope: This tissue, and the patients’ accompanying clinical stories, will help understand, identify, treat the frequently misdiagnosed condition.

The program’s launch represents “a watershed moment,” says Stacey Missmer, an epidemiologist at Michigan State University (MSU) who is not involved in the effort. “It’s the first time that a governmental body in the U.S. has determined that endometriosis is a priority worth legislating around—a priority worth funding.”

Endometriosis affects roughly one in 10 women and people assigned female at birth in the United States, and an estimated 190 million globally. It usually strikes during reproductive age, and can cause intense, chronic pelvic pain. It’s also a leading cause of infertility, which about one-third of women with endometriosis experience. Treatments are limited to painkillers, hormone treatments that can interfere with fertility, and surgery, after which the condition often recurs.

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