CARE About Fibroids, Responsum Health, Duke Clinical Research Institute, and The White Dress Project Announce Collaboration to Create Online Information Platform and Community Hub for Uterine Fibroids Patients
FOR IMMEDIATE RELEASE
August 13, 2019
Washington, D.C., and Durham, N.C., August 13, 2019 – Responsum Health (Responsum), an innovative creator of personalized patient newsfeeds and support platforms, and the Duke Clinical Research Institute (DCRI), a leading academic research organization, are excited to announce an agreement to collaborate on their shared mission to improve the quality of life for patients with uterine fibroids. They are joined in this effort by The White Dress Project and CARE About Fibroids, two of the nation’s top uterine fibroids patient advocacy organizations. The announcement follows Fibroids Awareness Month, recognized in July.
Under the agreement, Responsum will commit to developing and promoting a unique, uterine fibroids patient-centered information portal, similar to its work in other therapeutic areas. This new platform will serve the dual goals of providing comprehensive, understandable, and trustworthy information while helping to connect a nationwide community of patients. The new web-based tool and app, Responsum for UF, will synchronize with the DCRI’s unique patient registry, COMPARE-UF (Comparing Options for Management: Patient-centered Results for Uterine Fibroids).
The COMPARE-UF registry is funded by the Agency for Healthcare Research and Quality (AHRQ), in collaboration with the Patient-Centered Outcomes Research Institute (PCORI). DCRI serves as the Data and Statistical Coordinating Center.
The registry has enrolled more than 3,000 women from nine medical centers. By sharing their experiences with uterine fibroids treatments, these women are helping doctors understand symptom relief patterns, impact on pregnancy, and the need for additional treatment. The goal of COMPARE-UF is to help patients and their doctors make informed decisions about treatment options.
COMPARE-UF will follow the patients in its registry, who are women between the ages of 18 and 54 who have been diagnosed with uterine fibroids and who are not in the transition to menopause.
"We are very excited to be working with Responsum, CARE About Fibroids, and The White Dress Project to develop innovative ways for women to share their experiences with uterine fibroids, as well as to get the best possible information about their choices for treatment," said Dr. Evan Myers, principal investigator of COMPARE-UF at DCRI.
“We look forward to collaborating with the Duke Clinical Research Institute to help collect valuable insights from women with uterine fibroids,” said Andrew Rosenberg, founder of Responsum Health. “By bringing the patient experience to bear through our partnerships with The White Dress Project and CARE About Fibroids, we will create an online tool, newsfeed, and support platform that fills a vital information gap while simultaneously convening an authentic, welcoming online community for women with uterine fibroids.”
“We are thrilled to partner with the Duke Clinical Research Institute and Responsum Health as we continue to fulfill our mission of heightening public awareness and creating a greater sense of urgency around the toll and challenge of uterine fibroids,” said Jenny Rosenberg, executive director of CARE About Fibroids. “Combined with The White Dress Project’s incredible patient advocate network, we look forward to bringing the strategic communications capabilities along with the scientific and policy expertise of CARE About Fibroids to join this extraordinary opportunity to provide women with a trustworthy, online information platform to replace Dr. Google.”
“The White Dress Project is committed to growing, educating, and enriching a community of women who feel confident knowing they no longer have to suffer in silence with uterine fibroids,” said Tanika Gray Valbrun, executive director of The White Dress Project. “Our partnership with the Duke Clinical Research Institute and Responsum Health is a groundbreaking way to make sure women are better informed and equipped to be their own best advocates.”
About CARE About Fibroids
CARE About Fibroids is taking the lead in mobilizing women’s health advocacy and policy-focused organizations to build greater awareness of uterine fibroids, as well as a sense of urgency around the need for improved diagnosis, expanded and better treatment options, and enhanced patient access to appropriate care.
CARE About Fibroids is headquartered in Washington, D.C., under the direction of its executive director Jenny Rosenberg and a steering committee of leading independent nonprofits focused on women’s health. Currently, the steering committee is comprised of: the Black Women’s Health Imperative, COSHAR Healthy Communities Foundation, HealthyWomen, and To Know Is To Know. Additionally, general members of CARE About Fibroids include the American Sexual Health Association, the National Partnership for Women & Families, and The White Dress Project.
About Responsum Health
Responsum is a free, revolutionary patient engagement platform that monitors, searches, and curates the internet and then generates a personalized newsfeed of article summaries vetted by Responsum’s patient group partners. Responsum wraps the newsfeed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and use a legislative advocacy tool for policies that impact their health care. For more information, visit responsum.com.
About the Duke Clinical Research Institute
The DCRI is the largest academic research organization in the world, with a mission to develop and share knowledge that improves the care of patients through innovative clinical research. The DCRI conducts groundbreaking multinational clinical trials, manages major national patient registries, and performs landmark outcomes research. DCRI research spans multiple disciplines, from pediatrics to geriatrics, primary care to subspecialty medicine, and genomics to proteomics. The DCRI also is home to the Duke Databank for Cardiovascular Diseases, the largest and oldest institutional cardiovascular database in the world, which continues to inform clinical decision-making 40 years after its founding.
About The White Dress Project
The White Dress Project is one of the leading patient advocate organizations for women with fibroids. Our mission is to galvanize support globally, lead awareness efforts, and raise funding for uterine fibroids research and education. Even though more than 200,000 hysterectomies are performed each year for uterine fibroids and the annual direct health care costs in the U.S. exceeds $2.1 billion, very little is known about fibroids prevention or treatment. The White Dress Project aims to empower women to share their stories to collectively highlight the importance of this issue.
The White Dress Project, a 501(c)(3) founded by Tanika Gray Valbrun in 2014, is headquartered in Atlanta, Ga. Through the efforts of The White Dress Project, Georgia was the first state to declare July as Fibroid Awareness Month with the passing of House Resolution 1898. Through the efforts of The White Dress Project, resolutions have also been passed in New York, Florida, South Carolina, Pennsylvania, New Orleans, Washington D.C., California, and Maryland.
About Uterine Fibroids
Fibroids consist of lumps made of muscle cells and other tissues that grow in or around the wall of a woman’s uterus. These tumors can cause serious medical issues, including heavy menstrual bleeding, debilitating pelvic pain, urinary symptoms, and more. Fibroids account for one-third of all hysterectomies performed in the U.S. and disproportionately impact women of color.
 Stewart EA. Uterine Fibroids. New England Journal of Medicine. April 23, 2015. Available at: https://www.nejm.org/doi/full/10.1056/NEJMcp1411029