Meet Our Partners

There are many organizations, advocacy groups, and people working together to make the COMPARE-UF registry successful. Stakeholders include patients and clinicians, and representatives from clinical research organizations (CROs), professional societies, industry, insurance companies, and federal agencies.

The members of the Stakeholder Advisory Group (SAG) provide guidance to the COMPARE-UF investigators on the design and operations of the registry. The input from the SAG to the investigators on all aspects of the registry is critical to ensuring that the data collected and questions being answered are important to women with fibroids.
Expand each section to view the Stakeholder Advisory Groups and organizations committed to the success of COMPARE-UF.

If you would like to provide comments or have any questions about COMPARE-UF, please complete our survey.

Patients and Patient Advocates
Justine Atkinson, Fibroid Relief (or on Facebook)
Carla Dionne, MPH, MBA, National Uterine Fibroids Foundation
Sateria Venable, Fibroid Foundation
Paula Gwynn Grant, Patient Advocate
Shilpa H. Amin, MD, FAAFP, MBSc, Clinician and  Patient Advocate, Inova Health System, Virginia
Kathy Kelley, HysterSisters
Tanika Gray, White Dress Project
PaSean Wilson, Patient Advocate
Amy Miller, MA, Patient Advocate
Advocacy Groups of our Patient Stakeholders
FF-WEBSITE-HEADER-AThe Fibroid Foundation (originally called the Fibroid Initiative)—the foundation’s website contains information about Founder Sateria Venable’s personal journey to find treatment options for UF.

Justine Atkinson is executive director of Fibroid Relief, which strives to put the power of choice in the hands of fibroidrelief_web_logothose with UF. The website contains information on treatment, patient stories and other resources including an educational video series.

 

HysterSistersHysterSisters, as the name implies, offers woman to woman support for GYN medical and emotional issues surrounding the hysterectomy experience. Kathy Kelly’s website contains a wide array of information about diagnosis and care before and after hysterectomies.

 

Founded by Carla Dionne, the National Uterine Fibroids Foundation (NUFF) engages in charitable, educational and scientific activities related to the care and treatment of women who have UF or related conditions of the reproductive system. The NUFF website contains useful links, and information about the Dear Doctor Project, created to enhance communication and reduce confusion between a patient and physician.

 

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Tanika Gray’s The White Dress Project galvanizes support and promotes national awareness of UF. Their website contains useful information and a space to share your story.

Life Sciences Industry Stakeholders
Laura Kemp, Halt Medical
Doris Schechter, MD, InSightec
Janice Connor, Director,  Boston Scientific
Kristof Chwalisz, MD, PhD, Abbvie
Robert Mikan, MD, Cook Medical, Inc.
Lizette Warner, Philips Healthcare
Clinician/Professional Society Stakeholders
Scott Goodwin, MD, Society for Interventional Radiology
Eloise Skelton, MD, Association of Black Women Physicians
Richard Reindollar, MD, American Society for Reproductive Medicine
James Segars, MD, Johns Hopkins Medicine (representing the American Congress of Obstetricians and Gynecologists)
Linda Bradley, MD, Cleveland Clinic
CRO Stakeholder
Priscilla Velentgas, PhD, Quintiles
Federal Agency Stakeholders
Art Sedrakyan, MD, PhD, Weill Cornell Medical College; FDA Medical Device Epidemiology (MDEpiNet) Science and Infrastructure Center
Lisa Begg, DrPH, RN, NIH Office of Research on Women’s Health
Allison O’Neill, Division of Epidemiology, Office of Surveillance and Biometrics, Center for Devices and Radiological Health, FDA
Payer and Health System Stakeholders
Tina Raine-Bennett, MD, MPH, Kaiser Permanente Northern California
Tina Groat, MD, MBA, FACOG, OptumInsight
Alan Rosenberg, MD, Anthem, Inc.
Doris Lotz, MD, MPH, New Hampshire Department of Health and Human Services, Office of Medicaid Business and Policy
Funding Support

Agency for Healthcare Research and Quality (AHRQ) AHRQ provides administration support in collaboration with PCORI for COMPARE-UF. Find out more about their mission to improve excellence in healthcare from their website.

Patient-Centered Outcomes Research Institute (PCORI) PCORI is providing funding suport and collaborating with AHRQ on COMPARE-UF. Find out more about PCORI’s mission to help patients make informed healthcare decisions from their website. For information specific to UF, enter “uterine fibroids” in the search field.

National Institutes of Health (NIH) The NIH has a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. For example, enter “Uterine Fibroids” in the search field, and you will find details on over 200 on-going and completed studies related to uterine fibroids.