Since The Preeclampsia Registryâ„¢ 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.
Global CoLab participants meeting this week in London to discuss goals and philosophies of The Preeclampsia Registry.
Preeclampsia and other disorders related to high blood pressure in pregnancy complicate 5-10% 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, and 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 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. 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 http://www.preeclampsiaregistry.org or email [email protected].
For more information about the Global Pregnancy CoLaboratory, visit the Pre-EMPT website.
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