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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
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
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.