A first-of-its-kind national registry to improve treatment for women with uterine fibroids is being implemented across the U.S., including in the Triangle-area. Uterine fibroids are non-cancerous tumors that nearly 80 percent of American women will get in their lifetimes.
Women in the Triangle have the opportunity to participate in this unique registry called Comparing Options for Management: Patient-Centered Results for Uterine Fibroids (COMPARE-UF), which will collect information on patient experiences, including treatment regimens and health outcomes, to inform leading researchers on what matters most to the women they are treating.
Wanda Nicholson, MD, MPH, and professor of obstetrics and gynecology at the UNC School of Medicine, is the principal investigator for the Triangle-area registry.
“The goal of COMPARE-UF is to provide the best information possible to women with uterine fibroids, and the providers who take care of them, to help them make clear decisions about their care,” Nicholson said. “We are excited to be part of this important research, which will address questions that will help patients and clinicians make better informed choices about treatment options.”
Evan Myers, MD, MPH, of Duke University School of Medicine’s Department of Obstetrics and Gynecology is leading the $20 million collaboration between Duke Clinical Research Institute, Patient-Centered Outcomes Research Institute and the Agency for Healthcare Research and Quality.
“The investigators at the clinical centers are among the leading experts on fibroid treatments in the country, treating a very diverse group of women with this condition.”
“The investigators at the clinical centers are among the leading experts on fibroid treatments in the country, treating a very diverse group of women with this condition,” Meyers said. “In addition, patients are playing a major role in helping guide this research. We’ll have ongoing input from experts in observational research, as well as major professional societies, insurers and manufacturers of fibroid treatments.”
Study will inform clinicians what matters most to patients
Uterine fibroids are the most common, non-cancerous tumors in women of childbearing age and the second most common reason these women undergo surgery. Symptoms include severe pain, heavy bleeding, pain during intercourse and infertility. Up to 80 percent of all women develop uterine fibroids, and 1 in 4 of those will need some type of treatment. African-American women are nearly three times more likely to experience complications from the condition and are 77 percent more likely to miss work and fear job loss due to uterine fibroids. Treatment can include watchful waiting, medication, embolization, ultrasound and surgeries such as partial or total hysterectomy.
Very little research has been done to understand the impact of each treatment and how treatments affect recurrence, fertility and lifestyle. COMPARE-UF will provide important evidence-based research, which may lead to new insights and improvements in patient treatment and outcomes.
Laura Maddux, 36, of Chapel Hill will receive treatment for uterine fibroids at UNC Health Care later this month. She will undergo a myomectomy, which will remove her fibroids while keeping her uterus intact. Maddux, who said uterine fibroids have affected her quality of life for years, is now registered with COMPARE-UF so that her experience might help produce answers for other women.
“I’m participating in this study because I want to help find answers to the problems that have been so troubling to me.”
“I’m participating in this study because I want to help find answers to the problems that have been so troubling to me,” Maddux said. “It’s been frustrating that so little is known about what causes uterine fibroids, yet they are so common. I also want to encourage other women to talk about what is often an unspoken problem.”
Women scheduled to undergo a treatment for uterine fibroids at UNC can enroll in the study. Women who will be scheduling a treatment for uterine fibroids are encouraged to speak with their physicians for a referral or to consult Dr. Nicholson. Once enrolled, women will be asked to participate in an online survey and follow-up surveys to help researchers understand outcomes.
Institutions participating in the collaborative effort and the principal investigator include:
–University of North Carolina (Wanda Nicholson, MD, MPH)
–Mayo Clinic Collaborative Network (Elizabeth Stewart, MD)
–University of California Fibroid Network (Vanessa Jacoby, MD, MAS)
–Henry Ford Health System (Ganesa Wegienka, PhD)
–University of Mississippi Medical Center (Kedra Wallace, PhD)
–Northwestern Memorial Hospital – Chicago Consortium (Erica Marsh, MD, MSci)
–Brigham and Women’s/Harvard (Raymond Anchan, MD, PhD)
–Inova Health Systems (G. Larry Maxwell, MD)
–Department of Defense Clinical Consortium (William H. Catherino, MD, PhD)
Clinical sites span the country from Massachusetts to Florida, to Washington state, to Hawaii.
For more information on the study, visit COMPARE-UF at compare-uf.org, or call 919-843-1479.