Visit our COVID-19 and Preeclampsia resource page. Click Here
Menu

About The Preeclampsia Registry

Last Updated on April 30, 2020

PR_logo_fullcolor.png (75 KB)

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

Join the Registry

TPR participate ad.png (765 KB)

Join the Promise Walk
Copy of Promise Walk FB Post - Strides.png (729 KB)
STORY SPOTLIGHT
A Lot Of People Have It Much Better

After weeks of nightmares, phantom pain of an IV burning, of my twice-a-day alarm reminding me to take my BP medication, I remember crying to...

ReadMore
Share Your Story

It 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!

 

share your story

Related Articles