Special thanks to the 62% of you who completed The Preeclampsia Registry's enrollment questionnaire. Your participation helps advance preeclampsia research around the world!

A few words about the privacy and security of your data in our Registry. Your personal information (such as your name, address, and other information that identifies you or your family) is labeled with a code number, encrypted, stored in a secure place, and protected with a password. Only authorized people who work for the Registry have access to the code, and your identifiable information will not be shared with anyone outside the Registry. Approved scientists, researchers, and clinicians are given only de-identified patient data for their studies. We call this information "de-identified" because all personal identifiers have been removed.

All other information (such as hard copies of medical records) is stored in locked files and destroyed in accordance with the standards established by the HIPAA Privacy Act . Health insurance companies are not permitted access to research records, and participants don't have to tell their insurance companies they have participated in a research project. Research is different from clinical care, and research records are not a part of a person's medical record. 

Have you completed your enrollment questionnaire yet? We encourage you to take the time to finish it so you can fully participate in upcoming research. Simply log-in to the Registry at www.preeclampsiaregistry.org and select "Finish a Questionnaire that I Started" from your MyRegistry page.   

Registries can serve different purposes, but ultimately a patient registry is a platform to collect information from people who share the same condition and/or have similar experiences. Patient advocacy and rare disease organizations have become important contributors to research through patient-driven registries that provide an insight into living with the disease or condition. These organizations have sought the most effective avenues for contributing to and advancing research.

With so many questions and theories as to the cause and management of preeclampsia, the Preeclampsia Foundation created The Preeclampsia Registry, a patient-driven registry that provides survivors and their families an opportunity to play a key role in preeclampsia research.As a patient advocacy organization, the Preeclampsia Foundation is a large community of survivors, families, and friends joined in the search for an end to this devastating disorder. With so many questions and theories as to the cause and management of preeclampsia, a patient-driven registry (such as The Preeclampsia Registry) provides survivors and their families an opportunity to play a key role in preeclampsia research.

Thank you for your participation in The Preeclampsia Registry. This "living database" brings together those affected, their family members, and researchers to advance knowledge about preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy. Your experience is helping advance preeclampsia research so answers can be found.