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Last Updated on April 27, 2020


Everyone can play a role in preeclampsia research.

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Your Voice, Your Experience, Can Save Lives

The Preeclampsia Registry was born out of a call to action by preeclampsia survivors to create a place where you can use your experiences and stories to further research and become partners in finding answers to better prevent, treat, and one day cure preeclampsia.

The Preeclampsia Registry brings together preeclampsia survivors, family members, and researchers to engage in the common purpose of advancing knowledge and treatment of preeclampsia.

After providing consent, you will be asked a series of questions about your health, family, and pregnancy history. This information is made available to approved preeclampsia researchers to help them with their studies.

The registry is also a “living database,” meaning we’ll ask you to give us an update at least once a year and we may ask you additional questions as there are new ideas to explore.  

We will never share any information that can identify you, such as your name, date of birth, and contact information.

 

Who is eligible to enroll?

    • Women who experienced preeclampsia or a related hypertensive disorder of pregnancy such as eclampsia or HELLP syndrome.
    • Family members of women affected by preeclampsia or a related hypertensive disorder of pregnancy. Relatives can be either female or male to participate.
    • Women who have never had preeclampsia or hypertensive disorders of pregnancy. These participants will serve as a comparison or control group.

 

An authorized representative may complete the questionnaire on behalf of a woman who had preeclampsia, but died or is disabled as a result.

 

How it Works

We believe that together, as partners in research, our lived experiences and collective voices will help advance research to find a cause and a cure!

First, you will complete a consent form, then our participant survey.

 

Once Registered

  • Medical Records- Upload or give permission for us to request your medical records
  • Yearly Health Update- At least once a year, provide an update of your health information
  • Join New Studies- You will be notified about new studies to join
  • Ask Research Questions- You can ask your own research questions

 

Join the Registry

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Share Your Story

It is our collective voice that reduces isolation for others, raises awareness and improves healthcare practices. Let's raise up our voices so more women know about preeclampsia and HELLP syndrome and less women have adverse outcomes!

 

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