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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."

UPCOMING EVENTS

We’ll be Speaking Here


California Maternal Quality Care Collaborative
Preeclampsia Toolkit Review and Patient Support

September 25, 2015

 

Dignity Health Summit, Las Vegas, NV

October 1-2, 2015

 

Grand Rounds - Tampa General Hospital, Tampa FL

October 28, 2015

 

March of Dimes Prematurity Prevention Conference
Crystal City, VA

November 17, 2015

 

11th Annual Texas Conference on Health Disparities
Ft. Worth, TX

June 9-10, 2016

 

Invite Us to Speak at Your Event

 

Preeclampsia in the News

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What’s Happening on Twitter

Preeclampsia Want to do something quick that helps save lives? Share out our 7 Signs and Symptoms video, which is officially... http://t.co/JyOJPC2n4B
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Preeclampsia RT @PromiseWalk: WOW. Can we just say how AWESOME all of you are? Spread the word! http://t.co/QxGdcWEALY
Preeclampsia RT @Eleni_Z_Tsigas: Tomorrow we'll be reporting on The @Preeclampsia Registry http://t.co/fKH4forpVb: 2K+ participants, 49 countries, 500+ …

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