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The Preeclampsia Registry™ Goes Global

Última actualización el Martes, Septiembre 09, 2014

Debbie Helton
(321) 421-6957
[email protected]

For Immediate Release

The Preeclampsia Registry™ Goes Global
Global Pregnancy CoLaboratory acceptance marks one-year anniversary

Melbourne, Florida – September 10, 2014 – Since The Preeclampsia Registry™ was launched in September 2013, the online patient and family database for those affected by preeclampsia and related hypertensive disorders of pregnancy has enrolled more than 1,000 participants. Now one year later, the Preeclampsia Foundation is pleased to announce another major milestone – The Preeclampsia Registry’s acceptance into the Global Pregnancy CoLaboratory. Funded by the Bill & Melinda Gates Foundation as part of its PRE-EMPT initiative, this international consortium of databases facilitates research that addresses adverse pregnancy outcomes to improve the health of women and their infants.

Preeclampsia and other disorders related to high blood pressure in pregnancy complicate five to 10 percent of pregnancies, and lead to serious maternal and infant illness or death. In the United States, this life-threatening condition impacts one in every 12 pregnancies. Globally, by conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year.

The first of its kind to focus solely on hypertensive disorders of pregnancy, The Preeclampsia Registry captures self-reported and clinical information as well as family and pregnancy history, and will begin collecting biological data in 2015. Overseen by an Institutional Review Board, the registry ensures participants’ privacy and rights in medical research. The registry only shares de-identified information with approved scientists, researchers, and clinicians; de-identified information has had all personal identifiers such as name, address, and other information that identifies the participant and/or the participant’s family removed.

“The Preeclampsia Registry’s partnership with the CoLaboratory is an exciting step forward in advancing preeclampsia research that provides unique data from families and the ability to follow women for many years,” said Principal Investigator James Roberts, MD, professor of obstetrics, gynecology, and epidemiology at Magee-Women’s Institute & Foundation in Pittsburgh, Pennsylvania, and a member of the Preeclampsia Foundation’s Medical Advisory Board.

“We are excited to welcome the Preeclampsia Registry to CoLab,” said Dr. Roberts. “This is a valuable addition to our consortium that brings together researchers from all over the world and allows us to share quality clinical data and biological samples, and to facilitate new knowledge generation.”

CoLaboratory partners represent renowned research facilities in Canada, China, Denmark, Finland, New Zealand, the Netherlands, Norway, Sweden, the United Kingdom, and the US.

The Preeclampsia Registry is open to anyone who has experienced preeclampsia, eclampsia, HELLP Syndrome, or high blood pressure in pregnancy. Family members are also encouraged to participate.

To learn more or enroll, go to www.preeclampsiaregistry.org or email [email protected]
For more information about the Global Pregnancy CoLaboratory, visit https://pre-empt.cfri.ca/colaboratory/global-pregnancy-colaboratory.

About the Preeclampsia Foundation: The Preeclampsia Foundation is a U.S.-based 501(c)(3) non-profit organization established in 2000. It is dedicated to providing patient support and education, raising public awareness, catalyzing research and improving health care practices, envisioning a world where preeclampsia and related hypertensive disorders of pregnancy no longer threaten the lives of mothers and babies. For more information, visit www.preeclampsia.org.

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