The Preeclampsia Registry 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. The information we collect is aligned with standards and definitions used in most current research efforts; therefore, the data is “user-friendly” to the most number of researchers. Approved researchers will only have access to de-identified data (information without the patient's name), unless the patient signs a consent form to enroll in outside research.
The Preeclampsia Registry is a “living database”. This means that patients and their families can add and update information over any number of months and years, in fact, an entire lifetime. Based on new hypotheses and future lines of inquiry, additional questions will be added to The Registry. As patients update and add to their data, and respond to new questions, their data will continue to play a significant role in preeclampsia research well into the future.