Early Beta of The Preeclampsia Registry is demonstrated at SGI

Attendees at the Society of Gynecologic Investigation's Annual Meeting in Orlando on March 20-23 were treated to a "sneak peak" of The Preeclampsia Registry.  Although it is not expected to be publicly available until Summer 2013, investigators were called upon to review plans and provide feedback early in its development process.  Demonstrations were held at the Preeclampsia Foundation's exhibit booth.

Already Enrolled? Wondering What to Do Next? Check out "My Registry".

September 06, 2013

After logging in to The Preeclampsia Registry, click on the “My Registry” tab and use these additional features to keep us updated on your health and your child’s health, upload and attach your medical records and lab results, and even submit your own research questions. This is a “living database” so we’ll be using this section to pose new questions for you to answer, as well as to hear from you.

The Preeclampsia Registry is Live!

September 06, 2013

We 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 becoming a comprehensive picture of the impact of preeclampsia worldwide, discovering preventions and treatments, including reducing its long-term impact.  It’s 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 Registry :

  1. 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.
  2. Return to the website to login, 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.
  3. Using “My Registry”, available on the home page after you login, you can upload your medical records, provide updates on your health and your child’s health, and submit your own research ideas.
  4. 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:

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

Thank you,
Eleni Tsigas
Executive Director
Preeclampsia Foundation