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.
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
In the summer of 2020 I, a 23 year old girl from Peoria, IL found out I was pregnant for the first time. I was so overjoyed and overwhelmed w...
ReadMoreIt is our collective voice that reduces isolation for others, raises awareness and improves healthcare practices. Let's raise up our voices so more women know about preeclampsia and HELLP syndrome and less women have adverse outcomes!
Answers to our most frequently asked questions about the registry
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The Preeclampsia Registry is a valuable resource that you can turn to when posing new questions, testing new hypotheses, and building study cohorts. As a “living database” that i...
According to the World Health Organization, preeclampsia is one of the least funded areas of research, especially when considered against Disability Adjusted Life Years (DALYs). The Preeclampsia Found...
The Letter of Intent period is CLOSED for the 2020 Peter Joseph Pappas Research Grants funding program. Decisions will be rendered in December 2020 and the next funding round will be announced next ye...
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Melbourne, FL – December 30, 2020 – The Preeclampsia Foundation announces the recipients of its 2021 Peter Joseph Pappas Research Grants, a funding program designed to accelerate p...
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August 6, 2020 – Melbourne, FL – The Preeclampsia Foundation is seeking Letters of Intent for the Peter Joseph Pappas Research Grants funding program, designed to accelerate preeclampsia r...