Last Updated on April 30, 2020
Launched in 2013, the Preeclampsia Registry was built to create a partnership between preeclampsia survivors and researchers to advance our understanding of preeclampsia. As participants share their experiences, approved researchers are provided with access to “de-identified” health information – information that does not contain participant names or contact information. This helps researchers to find patterns that can lead to findings and further studies. The registry also accelerates studies as researchers are able to gather cohorts for new studies or pose new questions.
The Preeclampsia Registry also gives its participants the option of learning about other research studies for which they may qualify and provides them with the means of connecting with researchers.
Most importantly, patient registries unite the patient voice with research. Patients have questions, theories, and interests that are often different from investigators conducting formal research. By engaging patients in the research process, as we can through patient registries, the chances for discovery and improvement are an even greater possibility.
Scientific Advisory Council
The Scientific Advisory Council (SAC) played a key role in the development of the Preeclampsia Registry and continues to be essential to its integrity. The SAC provides representation amongst many disciplines including epidemiology, internal medicine, pediatrics, nephrology, genomics, obstetrics and gynecology (including Maternal Fetal Medicine), industry, National Institutes of Health, Centers for Disease Control, patient/consumer, and the Preeclampsia Foundation Medical Medical Advisory Board.
Jim Roberts, MD
University of Pittsburgh
Magee Women's Research Institute
Arun Jeyabalan, MD
University of Pittsburgh
Michelle Owens, MD
University of Mississippi
Janet Rich-Edwards, ScD
Harvard Medical School
Ellen Seely, MD
Brigham and Women's Hospital
Eleni Tsigas, BA
Preeclampsia Foundation, Chief Executive Officer
Sarosh Rana, MD M.P.H.
Co-chair
The University of Chicago
Hilary Gammill, MD
Bill and Melinda Gates Foundation
Ananth Karumanchi, MD
Howard Hughes Research Institute
Harvard Medical School
Emily Petersen, MD
Centers for Disease Control and Prevention
Alison Roberts, CNM
West Berkeley Family Practice
Kent Thornburg, PhD
Oregon Health and Science University
Tom Easterling, MD
University of Washington
Kyu-Ho Lee, MD PhD
Medical University of South Carolina
Robert Powers, PhD
University of Pittsburgh
Donna Russell, MHA
Donna Russell Consulting, LLC
Rebecca Troisi, ScD
National Cancer Institute
National Institutes of Health
Kenneth Ward, MD
Juneau Biosciences
Alina Brewer, BA (ex-officio)
Preeclampsia Foundation, Registry Manager
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