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The Preeclampsia Registry™ is a patient and family database designed to aid and accelerate preeclampsia research. Whether you are somebody who had a hypertensive disorder of pregnancy (preeclampsia, eclampsia or HELLP syndrome), or are a family member of somebody who did, we invite you to enroll and participate in The Preeclampsia Registry.
The Preeclampsia Registry™ is the first of its kind to focus solely on hypertensive disorders of pregnancy to bring together survivors, family members, and researchers from all over the world with the purpose of developing a comprehensive picture of preeclampsia and discovering preventions and treatments, including ones that will reduce its long-term impact.
This registry is a place to share your health and pregnancy history and even pose your own research questions, thus creating a significant resource for researchers to gather data and start new studies. Participation in any study is entirely optional.
The Preeclampsia Foundation’s mission includes, in part, a focus on catalyzing research – through small research funding, called Vision Grants, as well as through participating in trials and in some cases, initiating research studies ourselves. Women and their families, who have sometimes been deeply impacted by hypertensive disorders of pregnancy are often highly motivated to see research progress and are willing to participate in studies. We also do our best to stay on top of new research being published in a wide array of peer-reviewed journals. Check this site often for updates.
Preeclampsia was once called “the disease of theories,” but research efforts this past decade have produced exciting breakthroughs that may bring us closer to causality, improve diagnosis and even prediction, and lead to prevention and/or specific treatments. Some speculation remains over different theories and the true cause of preeclampsia is still unknown, but it has been encouraging to see basic research efforts accelerate, albeit more slowly than needed. Successful ongoing research needs far more support and funding, as our Open Letter to Dr. Francis Collins, Director of the National Institutes of Health (NIH) describes.
Several years ago, we had the honor of presenting our perspective regarding gaps in research at a workshop sponsored by the National Institute of Child Health and Human Development (NICHD). The exercise proved beneficial as we developed the patients’ perspective – such as shedding light on gaps in health services and patient/provider communications; unfortunately, no funding was allocated to address these or the many important areas that were raised by the high caliber experts in attendance. The paper that resulted from the workshop, "Preeclampsia: A Pressing Problem," captures several areas of research gaps, many which still exist today.
International Society for the study of Hypertension in Pregnancy
October 23, 2016
San Paulo, Brazil