For Researchers

The Preeclampsia Registry is a valuable resource that you can turn to when posing new questions, testing new hypotheses, and building study cohorts. As a “living database” that includes extensive health and pregnancy history, natural history, clinical data, and medical records, it also collects longitudinal data and has the capability to ask new questions of our participants. The information collected is aligned with standards and definitions used in most current research efforts, therefore, the data is "user-friendly" to the most number of researchers.

Once approved, you will be able to access and analyze de-identified data, search for a study cohort, or use our clinical study recruitment services. The trust patients 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.

If you would like us to collect new information in the registry or are interested in submitting a proposal to access registry data, please send an email to the Registry Manager at registry@preeclampsia.org

How can the registry help?

• Provides access to existing de-identified data and samples
• Poses new questions
• Collects new data or biological material
• Recruits participants for ongoing clinical trials
• Conducts longitudinal studies (consent allows for ongoing contact)

What does the registry collect?

• The registry is aligned with data collection standards and definitions used in most current pregnancy-related research efforts. We have over 1,300 data variables that include:
  • An extensive self-reported medical, pregnancy, and family history
  • Abstracted medical records data (subset of participants)
  • Long-term follow-up data for both the participant and her children
  • DNA samples (subset of participants)
  • Genetic variants and whole exome sequencing data (available soon)
  • New survey data
• We encourage researchers to contribute newly collected data and biological samples for future studies.
• Request a list of data variables and dashboard reports at registry@preeclampsia.org

How to access the data or start a new study:

• Contact the Registry Manager Alina Brewer at registry@preeclampsia.org to discuss your study ideas and needs.
• Submit a proposal application for our internal review.
• Sign a data use agreement.
• Pay a cost-recovery fee. This is not intended to be a barrier to research as we only seek to recover the costs we’ve accrued to gather and maintain this data.
• Provide evidence of IRB or other ethical approval or exemption.

We appreciate the support of Predictive Laboratories, Inc.,
the official genetics laboratory of the Preeclampsia Registry.