Endometriosis Foundation of America 2013
Current Research Priorities – Stacey Missmer, PhD
Tamer Seckin, MD: Hello everyone, I am Dr. Tamer Seckin. I am an endometriosis surgeon. My passion is to treat the disease endometriosis. As you may all know endometriosis is a disease that affects females of reproductive age in their most productive years, however, causing them severe loss of quality of life, sub-fertility, infertility, is the major cause of hysterectomy and the number one cause of pain in women.
Today, I will introduce to you a series of very interesting individuals, professionals and some patients that are willing to come out and share their experience with you. Let me introduce these friends of mine, my circle, with whom we have worked together for many years who have also taught me. We have shared a lot of knowledge and that is how we work with endometriosis patients. It is a team practice.
Dr. Stacey Missmer from Harvard University will be talking about the research aspect of endometriosis from adolescence to menopause. From every level she will review her findings.
Stacey Missmer, PhD: The critical research priority is expanding our understanding of what endometriosis is. We know that how endometriosis looks upon surgical visualization varies from woman to woman. We know that the location and the appearance of the endometriosis varies. We know that the most common appearance in adolescence versus adult women is different. We also know that women present with very different symptoms. There are women with pain; there are women with no pain. Among the women who have pain the types of pain they experience, patterns, how it changes over their lives is different. Currently all of our research just sums up just includes all of these different subtypes and it does not discriminate between them. The critical issue currently is having large enough studies from diverse enough groups of women and geographic locations to begin to tease out what these differences mean. The differences are real and therefore, biologically, have to be important. Knowing those differences then influences our ability to discover what treatment benefits specific to these different subtypes are and that is where the field has to go next.
What we currently understand to be endometriosis is likely many subtypes. We are not saying that it is not endometriosis, what we are saying is there are different types of endometriosis that have different consequences and will respond differently to treatments. It is very similar, for example, one of the great breakthroughs of the last decade in cancer treatments is that we now understand that there are, for example, in breast cancer, there are many types of breast cancer and they respond differently to different treatments. It is often termed as individualized treatment. But what that really means is treating the specific characteristics of your disease. That is what is important in endometriosis.
It is crucial as we focus on discovering and identifying these different subtypes to include women from different geographic regions who present with different symptoms. Whether they are presenting to an infertility clinic, whether they are presenting at age 14 because they already are in crippling pain, whether they are presenting in their 20s because they are struggling with career and educational attainment because of the symptoms of their disease. These characteristics are entering into the medical community differently. So we have to have a very broad umbrella inclusion of sources of reaching patients, reaching women to be identified and therefore included in our research studies.
In the next five years what is most important to girls and women with endometriosis to the clinicians and scientists who care for them is identifying factors that can improve treatment and development. What we know is we are only capturing a small portion of the women with endometriosis because the only way to be diagnosed is to have a clinically advanced surgeon who understands visualization and treatment of endometriosis. One of the key things in the next five years is developing improved, what we call non-invasive, so non-surgical, diagnoses.
The other very important thing is as we are focusing on these subtypes of endometriosis how they can inform treatment development. The reason the next five years are critical is that it is unlikely that we will have a revolutionizing treatment specific to these subtypes within five years. What has to be the focus though for the ten year vision is in these five years we have to be identifying, enrolling and collecting information from women with endometriosis across these broad geographic groups. That takes a large focus endeavor for both clinicians and also patients willing to participate in research studies.
One of the steps that we are taking toward this five year vision of advancement is that currently the World Endometriosis Research Foundation and leading researches throughout the globe are beginning an initiative to do what we are calling harmonization of methods. This means we are developing protocols for enrolling women into studies, standardizing the information being collected from them, standardizing what types of clinical samples will be collected and then also establishing what we call follow up methods, which is it matters if a 16 year old is diagnosed with endometriosis. We want to know what her experience is by age 20. We call this life course epidemiology. It means that following patients over time to see the true outcome of their treatments, the true ultimate success of fertility and what their life goals are. Unless we create systems to collect those data we will never know.
There are answers that we will develop short term. But, again, getting at this life course issue the real goal is to know when to intervene for patients, the type of intervention and how that will affect their life through their reproductive years. That takes time to follow up. In addition, we need these large and diverse groups of women, enrolling those women and collecting information is not a next week prospect. But if we do not start now with intensity then that never happens.