Despite the high prevalence of endometriosis – a condition that is estimated to affect about 10% of women of reproductive age – available treatments are inadequate for some women with chronic pain, and diagnosis is often delayed.

Stacey A. Missmer, Sc.D., the scientific director of the Boston Center for Endometriosis, is looking to advance understanding of the condition through the Women’s Health Study: From Adolescence to Adulthood. In an interview, Dr. Missmer, who is also the director of epidemiologic research in reproductive medicine at Brigham and Women’s Hospital in Boston, shared the progress of the study and her assessment of the treatment landscape.

Question: How would you rate the currently available treatments – both in terms of medications and surgery – in relieving the symptoms of endometriosis?

Dr. Missmer: The currently available treatments work well for some women and girls with pelvic pain, but it gets more difficult once that pain becomes chronic. If women have geographic and financial access to assisted reproductive treatment, then this works well for most women with endometriosis who also have subfertility. The great dilemma is that for pelvic pain, new nonhormonal/nonsurgical treatments have been slow to come for those who do not find relief with current treatments. These girls and young women are impacted just when they most need to be afforded a high quality of life that allows them to pursue all of their goals and dreams unimpeded by the symptoms associated with endometriosis.

Question: How does the Women’s Health Study: From Adolescence to Adulthood help advance treatment options?

Dr. Missmer: I am very proud of the Women’s Health Study: From Adolescence to Adulthood (A2A). Most studies of endometriosis have focused on women in their 30s and 40s, particularly those who present with infertility as their main health concern. However, we know that for women with endometriosis, the majority experience pain as their presenting symptom, and most report that endometriotic pain began during their teens and 20s. Uniquely, the A2A is a cohort of girl as young as 7 and young women, as well as those up to age 50. It is also uniquely a longitudinal cohort. By enrolling these girls and women now and following them into the future, we will be able to identify what characteristics in adolescence and young adulthood predicted who responds well to current treatments both in the short term and long into their reproductive and productive years.

We’ll also be able to discover the characteristics of those who did not respond as well, and we expect that this will drive us toward identifying unique groups of patients – and consequent biologic markers and patterns that are the basis for developing new treatments and prognostic tools for endometriosis.

Since November 2012, we have enrolled nearly 1,000 participants. Our initial enrollees are now completing their third year of lifestyle and symptom questionnaires, clinical details, and providing biologic samples. Their contributions are invaluable and are designed to be consistent with the harmonized data collection tools that we developed in collaboration with our national and international colleagues through the World Endometriosis Research Foundation (WERF). These Endometriosis Phenome and Biobanking Harmonisation Project (EPHect) tools are publicly available and will allow us to combine data from our cohort with participants at other sites to begin to detect geographic and patient-specific treatment response differences across the globe.

Question: What other studies are you closely watching?

Dr. Missmer: I am thrilled about the opportunities that the WERF EPHect tools offer us and our respected colleagues across the globe. I’m quite excited to see what new collaborations are formed and what creative hypotheses are tested. We’re in the midst of a renaissance in endometriosis understanding. Despite its prevalence and potentially debilitating impact on girls and women, endometriosis research is dramatically underfunded. This impacts discovery itself, but it also diminishes the ability for young enthusiastic brilliant scientists to be drawn to and remain dedicated to our field.

Question: How far are we from a noninvasive test that physicians could use to diagnose endometriosis and monitor its progression?

Dr. Missmer: How far in terms of a time line is difficult to determine. Again, I stress that I believe wholeheartedly that we are in the midst of a renaissance for endometriosis. We now have the tools to advance multidisciplinary scientific discovery with the ability to conduct studies with large numbers of diverse girls and women and to rigorously detect changes in their symptoms across the life course. I have no doubt that this will lead to advancement of precision medicine that allows endometriosis-focused scientists to develop noninvasive diagnostics and novel treatments. The key is that everyone in the field of endometriosis work together with this goal in mind.

mschneider@frontlinemedcom.com

On Twitter @maryellenny

Q&A: Identifying gaps in the treatment of endometriosis