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Registry Off to a Strong Start

Last Updated on Saturday, October 05, 2013

The launch of The Preeclampsia Registry™ is off to a strong start. Three hundred individuals have entered information that will help generate hypotheses and test ideas. Investigators are already planning research studies that will use this unique data set. Nowhere is it more true than in a disease registry that every person makes a difference. We look forward to more of you sharing your pregnancy history and longer-term health information.

Research Published in Peer-Reviewed Journal

The staff of the Preeclampsia Foundation are honored to occasionally partner with investigators to publish colloborative research. It's been a while in coming but we are excited this week about the November publication of a patient study initiated and funded by The Preeclampsia Foundation in 2008 and with data analyzed in 2011. The paper, "Prenatal education is an opportunity for improved outcomes in hypertensive disorders of pregnancy: results from an Internet-based survey," was published in the November 2013 issue of the Journal of Maternal Fetal Neonatal Medicine. Its authors are the Foundation's Executive Director, Eleni Z. Tsigas, and three preeclampsia researchers: Dr. Anne B. Wallis, Dr. Audrey F. Saftlas, and Dr. Baha M. Sibai.

Their paper reports on our 2008 survey of 754 women who visited the Preeclampsia Foundation website, in which we found that most received prenatal checkups and regular screenings, but only 42% "definitely" recalled specific education about preeclampsia and only half "fully understood" the explanation. However, 27 of the 169 women (75.0%) who understood acted on this knowledge by promptly reporting symptoms and complying with treatment. Of the 46 who did not remember some or any of the education, only 3 (6.0%) took any action. The difference between these two groups is highly significant.

The authors conclude that knowledge enables women to spot signs and symptoms, leading to earlier diagnosis and management, and to reduced morbidity and mortality. They propose the adoption of formal guidelines on preeclampsia education.

Survey studies like this one can be accelerated through our registry of preeclampsia survivors, as registrants will be invited to participate in future surveys.

Feedback from last month's Expectations newsletter indicated your enthusiasm to support research. The Boston Promise Walk Facebook page proclaimed "The dollars we raise here in Boston go to supporting research initiatives like those highlighted in the PF's Expectations newsletter this month. Did you know that there is major preeclampsia research right here in numerous institutions and corporations in our own community? Really cool stuff."

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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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