SWHR’s Interdisciplinary Network on Estrogen-Driven Diseases brings together clinicians, researchers, patients, and health care decision-makers to provide thought leadership on how to address the gaps in research, diagnosis, treatment, and care for endometriosis, uterine fibroids, and related conditions and symptoms.
The goals of the network are to:
Identify unmet needs and articulate necessary incentives to drive innovation in research, diagnosis, and treatment for estrogen-driven diseases.
Engage and inform patients, health care professionals and providers, payers, policymakers, and employers about the patient experience, disease burden, stigma, and impact to society.
Develop strategies and materials to inform and impact value-driven decision-making about estrogen-driven diseases in diagnosis, treatment, and access to care.
An estimated 10% of reproductive-age women are living with endometriosis, a condition in which tissue that resembles that of the lining of the uterus grows outside the uterus, leading to lesions, heavy bleeding, and painful periods. (For a quick overview of endometriosis, check out SWHR’s fact sheet.) About 26 million women suffer from uterine fibroids, a condition in which benign tumors growing in and around the uterus cause heaving and irregular bleeding, anemia, and painful periods. Both diseases can cause severe and debilitating pelvic pain and problems with fertility, significantly impacting the lives of the women with these conditions. The normalization of women’s pain and the stigmatization of menstrual issues have resulted in a lack of scientific innovation and public awareness for many diseases and conditions that disproportionately impact women.
Sawsan As-Sanie, MD, University of Michigan
Sarah Dominguez, PT, MSPT, CLT, WCS, Foundational Concepts
Paul Fronstin, PhD, Employee Benefit Research Institute
Kelly Gavigan, MPH, Global Healthy Living Foundation
Brian Gifford, PhD, Integrated Benefits Institute
Linda G. Griffith, PhD, Massachusetts Institute of Technology
Jhumka Gupta, PhD, George Mason University
Matthew Harman, PharmD, MPH, Employers Health
Tara Hilton, The Yellow Cape
Stacey Missmer, ScD, Michigan State University
Lauren Neves, JD, PhRMA
Abby Norman, patient advocate
Nkem Osian, MPH, White Dress Project
Lindsey Peters, patient advocate
Christine Sieberg, PhD, EdM, Boston Children’s Hospital
Hugh Taylor, MD, Yale University
Sara van Geertruyden, Partnership to Improve Patient Care
Sateria Venable, Fibroid Foundation
Kedra Wallace, PhD, University of Mississippi Medical Center
Assessing Research Gaps and Unmet Needs in Endometriosis, American Journal of Obstetrics and Gynecology
- Endometriosis: Why Is It So Hard to Get Good Care?, Everyday Health
- Endometriosis Must Come ‘Out of the Shadows’: New Review, Medscape
- More People Know About Endometriosis Than Ever. Doctors Haven’t Caught Up, Huffington Post
- How Stigma Is Preventing Women From Seeking Endometriosis Help, HealthCentral.com
- New Endometriosis Report Highlights its Misunderstood Etiology, Practical Pain Management
- Multidisciplinary Approach, Awareness Will Most Benefit Endometriosis Patients, Experts Say, Endometriosis News
- Priorities and Unmet Needs of Endometriosis Management, Endo News
- Women with endometriosis ‘going undiagnosed for a decade,’ Hale ‘n Hearty
- Endometriosis: how to better care for women who suffer from it?, Pourquoi Docteur (French language publication)
- Midlife melancholy, Deccan Herald
- Gender Bias and the Ongoing Need to Acknowledge Women’s Pain, Practical Pain Management
- Increase Research Funding, Collaboration Key to Addressing Endometriosis, Research!America
- PIPC Weekly Update: SWHR Study: Barriers to Care with Women with Endometriosis, Partnership to Improve Patient Care
- Waco-Area Women Struggle to Find Treatment for Endometriosis, Waco Tribune
Endometriosis Roundtable and Public Forum
SWHR convened a group of researchers, clinicians, patients, and other stakeholders for a one-day roundtable meeting and public forum on April 10, 2018, to identify unmet needs and knowledge gaps in endometriosis, and explore the best means to further research, expand diagnostic and treatment options, and improve disease awareness and identification. Read more about the public forum.
On June 19, 2018, SWHR held a congressional briefing, “Endometriosis: Erasing Stigma, Improving Patient Care,” during which a panel of experts addressed the current state of endometriosis research as well as policy solutions to improve a woman’s diagnosis, treatment, and access to care. Read more about the congressional briefing.
An SWHR working group published an expert review in the American Journal of Obstetrics and Gynecology that identifies areas of need to improve a woman’s diagnosis, treatment, and access to quality care, as well as highlights priorities for the future of endometriosis research and care.
Despite its prevalence and potentially severe effects on women, their families, and society, endometriosis is not well known or well understood. SWHR hosted a congressional briefing on June 19 to discuss the current state of endometriosis research as well as identify policy needs to improve a woman’s diagnosis, treatment, and access to care.
SWHR has sole authority over the scope and content of this program. Sponsorship of this network does not imply agreement with any content and/or comments presented by the members during network proceedings.