The Preeclampsia Registry tops 2,000
What this means for research
The Preeclampsia Registry™ has enrolled more than 2,000 participants since its launch in September 2013. Sponsored by the Preeclampsia Foundation, The Preeclampsia Registry is the first of its kind to focus solely on hypertensive disorders of pregnancy, bringing together survivors, family members, and researchers from all over the world. Its purpose is to develop a comprehensive picture of preeclampsia to help discover preventions and treatments, including ones that will reduce the disorder’s long-term health impact.
As the online patient and family database for those affected by preeclampsia and related hypertensive disorders of pregnancy, The Preeclampsia Registry has been designed to aid and accelerate preeclampsia research. Women who have experienced preeclampsia and related disorders may enroll and participate, along with their family members and even friends who were not affected to serve as research “controls”.
The Preeclampsia Registry captures self-reported and clinical information, and family and pregnancy history. We began collecting biological data earlier this year and are completing our current project of sample collection for the registry’s biobank. So far, we have collected more than 500 samples from preeclampsia survivors and their sisters, partners, and children that will help us study preeclampsia’s connection to cardiovascular disease.
Presently, there are six ongoing research initiatives in different phases of completion. One is looking at the genetics of symptoms that women experience, or don't experience. Another will analyze the 'patient journey' from illness to diagnosis to management.
Each participant’s story, medical and pregnancy history, and ongoing health reporting can help scientists unravel the pieces of the preeclampsia puzzle. By allowing us to review your medical records pertaining to preeclampsia, we are able to verify the information you are entering into the registry. This is very important to some research studies. We encourage participants to provide their full medical records and are here to help them make the request to their doctors and/or hospitals. Overseen by an Institutional Review Board, the registry ensures participants’ privacy and rights in medical research at all times.
Participants can view charts and graphs in the "How Did Others Respond?" section on their “My Registry” page and may find data interesting to them. They can find out if other participants experienced the same symptoms or treatments. Because confidentiality is our top priority, no names or identifying information appears on the reports and statistics are displayed as percentages. Participants also have the ability to pose their own research questions in the “My Registry” section of this website.
According to Alina Brewer, Research Coordinator for The Preeclampsia Registry, “There’s a tremendous need for cultural diversity in the registry. Studies are most accurate when they can mirror the population affected by a disease, and increasing our racial and ethnic representation will help investigators gain a better understanding of the characteristics of this disease and validate The Preeclampsia Registry as a valuable resource.”
Participants help create a significant resource for researchers to gather data, start new studies, and make discoveries that will positively affect health outcomes for mothers and babies for many generations to come.