About the Preeclampsia Registry

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.

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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.

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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.

About the Preeclampsia Foundation

Established in 2000, the Preeclampsia Foundation is the only national 501(c)(3) not-for-profit patient advocacy organization serving the 5-8% of pregnant women - approximately 300,000 women each year in the U.S. -  who are affected by hypertensive disorders of pregnancy such as preeclampsia (formerly known as toxemia), eclampsia, and HELLP syndrome. We are advised by a Medical Advisory Board comprised of top medical and scientific experts in preeclampsia and related fields, and partner

with other non-profit organizations, governmental agencies, academic institutions, and corporations to achieve our mission. Our Non-Profit Tax ID Number is 91-2073087.

Scientific Advisory Council

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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 
Co-chair                              
University of Pittsburgh
Magee Women's Research Institute

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Arun Jeyabalan, MD
University of Pittsburgh

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Michelle Owens, MD
University of Mississippi

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Janet Rich-Edwards, ScD
Harvard Medical School

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Ellen Seely, MD
Brigham and Women's Hospital

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Eleni Tsigas, BA
Preeclampsia Foundation, Chief Executive Officer

Sarosh Rana, MD M.P.H.

Co-chair

The University of Chicago

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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  

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Alina Brewer, BA (ex-officio)
Preeclampsia Foundation, Registry Manager

Steering Committee

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The Preeclampsia Foundation believes that to be effective stewards, it is essential to be transparent about research practices and intentions, and to communicate openly and clearly with participants. For this reason, the Preeclampsia Registry Steering Committee was organized to develop policies related to data gathering, validation, sharing, and research priorities. This committee is comprised of members of the Preeclampsia Foundation's Patient, Scientific, and Corporate Advisory Councils, Medical Advisory Board, and Board of Directors.

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The Steering Committee is responsible for reviewing proposals from researchers seeking to use data from the registry and developing key policies.

Eleni Tsigas, BA
Principal Investigator

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Hilary Gammill, MD

Scientific Advisory Council

Alina Brewer, BA 

Registry Manager

Jim Roberts, MD
Scientific Advisory Council

Norlisa Abernica-Kefffer
Patient Advocate

Tom Easterling, MD
Medical Advisory Board

Patient Advisory Council

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The Patient Advisory Council (“PAC”) serves as an advisory resource to the Board of Directors and Preeclampsia Foundation staff for the purpose of maintaining and furthering the Foundation’s position as a patient-centered, patient-driven, patient advocacy organization. The patient voice and experience are integral to the mission of the Foundation, therefore, the PAC operates to directly engage patients, the Board, and staff in meaningful, ongoing communication, and keep the patient at the forefront of all we do.

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Each member of the Patient Advisory Council is a preeclampsia survivor or a family member of a woman who suffered death or disability such that she is unable to represent herself as the result of preeclampsia. To read their full stories, click here.

Click here for more information about our Patient Advisory Council