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.

PFLOGOS_color_4x.png

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

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

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

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

Kenneth Ward, MD
Juneau Biosciences  

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


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

 

Steering Committee

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.

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

Hilary Gammill, MD

Scientific Advisory Council

Alina Brewer, BA 

Registry Manager


Jim Roberts, MD
Scientific Advisory Council

Norlisa Abernica-Kefffer
Patient Advisory Council


Tom Easterling, MD
Medical Advisory Board

 

Patient Advisory Council

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.

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.

Heather Alonge

Chair

Lisa Aaron

Member

Norlisa
Abrenica-Keffer

Member

Alexandra
De Leon

Member

Alissa Goodman

Member

Toyin Idehen

Member

Linda
Laszewski

Member

Jasmin Mago

Member

Lauren Pappas

Member

Ushma Patel

Member

Christina Simmons

Member

Kim Smith

Board of Directors Liaison

Rebecca Britt

Staff Liaison

 
 
 

The Preeclampsia Registry Staff

Alina Brewer, BA

Registry Manager

Alina brings a diverse background of implementing research initiatives in a variety of medical fields. She received a Bachelor’s degree in Cultural Studies from Brigham Young University-Hawaii and started her career in research in 2007 enrolling participants for a genetic scoliosis study. 

 

Since then, Alina has coordinated participant enrollment, interfaced with physicians and institutional review boards, and developed study websites and patient communications for several studies including a variety of pediatric motor disorders (such as spinal muscular atrophy) and degenerative disc disease. She also worked for a non-profit organization on the start-up of Recurrent Pregnancy Loss and Pre-Term Labor studies. 


Alina cares deeply about research and the positive outcomes for families and individuals that can result from the efforts of both researchers and participants. She has a passion for helping others and feels fortunate to work with women and families affected by preeclampsia with the goal of advancing our knowledge of this poorly understood disorder.

Eleni Tsigas, BA

Principal Investigator

Eleni Tsigas is the Chief Executive Officer of the Preeclampsia Foundation. Prior to this position, she served in a variety of volunteer capacities for the organization, including six years on the Board of Directors, two as its Chairman. Working with dedicated volunteers, board members, and professional staff, Eleni has helped lead the Foundation to its current position as a sustainable, mission-driven, results-oriented organization.

As a preeclampsia survivor herself, Eleni is a relentless champion for the improvement of patient and provider education and practices for the catalytic role that patients can play to advance the science and status of maternal-infant health, and for the progress that can be realized by building global partnerships to improve patient outcomes.

Eleni has served as a technical advisor to the World Health Organization (WHO), is a member of the PRE-EMPT Technical Advisory Group and Knowledge Translation Committee (funded by the Gates Foundation), and participates in the Hypertension in Pregnancy Task Force created by the American College of Obstetricians and Gynecologists (ACOG), as well as a similar task force for the California Maternal Quality Care Collaborative (CMQCC). Eleni is frequently engaged as an expert representing the consumer perspective on preeclampsia at national and international meetings, and as a spokesperson in various public speaking venues. She was honored to deliver The Jim & Midge Breeden Lecture as part of ACOG’s 2012 Annual Clinical Meeting President’s Program.

 

Eleni has facilitated several research initiatives that have been enabled by consumer participation, authored a comprehensive chapter on patient advocacy in the peer-reviewed journal Best Practice & Research: Clinical Obstetrics and Gynecology (August 2011), and secured media coverage in national consumer magazines, as well as newspapers, radio, and online.