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The Preeclampsia Registry Growing

Last Updated on Wednesday, July 09, 2014

We've made substantial progress with The Preeclampsia Registry since last month and now have 925 enrolled participants.  This living database brings together those affected, their family members, and researchers to advance knowledge and discover preventions and treatment for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

We're asking participants of The Preeclampsia Registry to upload their medical records, which makes the information collected even more valuable for scientific research by confirming your information with clinical or hospital records. As always, this information is never shared with qualified investigators without de-identifying it first. Your personal information is fully protected as explained in The Preeclampsia Registry's informed consent process.

It's as Easy as One, Two, Three

To Enroll:

    Go to www.preeclampsiaregistry.org and complete the online registry questionnaire
    Allow us to gather information from your medical records
    Return to our website at least yearly to provide an update

To Upload Your Medical Records:

    Contact your healthcare providers to check if they offer online portals for patients to access, download, and share their medical records (if this service isn't available, gather your medical records directly from your providers)
    After you've enrolled, log onto www.preeclampsiaregistry.org and go to "MyRegistry"
    Use the "Upload Medical Records" feature

For more information on secure online electronic access to medical records, visit http://www.healthit.gov/ or watch this video.

New Feature Shows How You Compare

Enrolled participants can also now explore the many bar graphs and pie charts in the "How Did Others Respond?" section of their MyRegistry page to see how others responded to the Registry questions. For example, they can find out the percentage of participants who experienced similar symptoms, treatments, and outcomes.

Take this pie chart as an example: It shows responses to the question, "Did you receive treatment with magnesium sulfate during this pregnancy?" As you can see, 75 percent of respondents indicated yes, 20 percent answered no, and five percent either didn't know or didn't answer.

For more information, please visit www.preeclampsiaregistry.org.

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What’s Happening on Twitter

Preeclampsia What does it mean to be a Foundation volunteer? Hosting a Promise Walk. Moderating our Community Forum. Providing... http://t.co/wPPFLayb5C
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Preeclampsia RT @Eleni_Z_Tsigas: Widmer/WHO suggests many subtypes of PE, thus biomarkers detect @Preeclampsia best on only certain subtypes. #isshp14
Preeclampsia RT @Eleni_Z_Tsigas: Patient education about @Preeclampsia is as challenged in Brazil as it is in the US. #isshp14 http://t.co/wpCGiPCDYV

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