The Preeclampsia Registry Goes Live!

Creado en Lunes, Septiembre 09, 2013 Última actualización el Miércoles, Abril 09, 2014

The Preeclampsia RegistryWe are excited to announce the launch of The Preeclampsia Registry™, a patient and family database designed to aid and accelerate preeclampsia research! Whether you are somebody who had a hypertensive disorder of pregnancy like 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.  

The Preeclampsia 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.

To participate in The Preeclampsia Registry™ :

  • Go to www.PreeclampsiaRegistry.org and click "Enroll Now."   Provide your contact information and then check your email to get your unique username and password.
  • Return to the website to log in, read and approve the consent form, and complete the online registry questionnaire. This can take up to an hour of your time, but may be completed in more than one sitting.
  • Using "My Registry," which is available on the homepage after you log in, you can upload your medical records, provide updates on your health and your child's health, and submit your own research ideas.

In the future, you may be asked to sign a medical records release form to allow The Preeclampsia Registry Administrator to request your medical records.

After enrollment in the Registry, and with your permission, you can expect the following:

  • To be contacted by email or phone at least once a year to update your information.
  • Answer new questions as we or researchers have new ideas to explore.
  • Your information will be combined with others' and shared with researchers, but your identity will not be shared. Your privacy remains our top priority.
  • You may be contacted about other clinical trials being conducted that you may qualify for.
  • You may be contacted about donating a sample of blood, tissue, or other biological specimen. (If you decide to donate a sample, you will need to provide separate consent.)

We appreciate your continued support to help us accelerate our understanding of preeclampsia. If you have any questions, please email our Research Coordinator, Alina Brewer, at Registry@preeclampsia.org or call us at 321-421-6957.

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