The goal of The Preeclampsia Registry is to accelerate research. It was created after many discussions with organizations that have a common goal of collecting data in a way that would be most helpful to moving research forward. Approved researchers will only have access to de-identified data (information without names). If researchers would like to enroll you in their study and gather additional information, The Preeclampsia Registry will communicate with you for your consent for enrollment. The trust you place in us is uncompromised; therefore, clinical studies must be IRB-approved and evaluated by our internal review board to ensure patient safety and relevance to our mission.
The Preeclampsia Registry is a “living database”. This means that we would like you to enter information over a long period of time, with subsequent pregnancies and long term health information. Data with longevity will enable new hypotheses and supplemental questions to be investigated by researchers going forward. With your data becoming even more meaningful over time, The Registry will continue to play a significant role in preeclampsia research, both now and in the future.
Since its founding in 2000, the Preeclampsia Foundation has served as a patient advocacy organization encouraging the voice of patients and families to be heard. As many have shared their stories and asked questions on our online forums and social media sites, it became clear that The Registry also needed to be a place where patients and families can motivate new lines of preeclampsia research. In The Preeclampsia Registry, you have the ability to not only share your health and pregnancy history and update it, but also pose your own research questions in the “My Registry” section of this website.
Thank you for helping to 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.