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International Zika Registry to Estimate Magnitude of Risk of Congenital Zika Syndrome

FEB 25, 2017 | KRISTI ROSA
Since researchers need a large pool of information in order to present a global perspective, both individual physicians and healthcare facilities worldwide can share patient information, as long as they have received approval from local, regional, and national authorities prior to enrollment.

In an exclusive interview with Contagion®, Dr. Panchaud explains how the registry protects the identity of patients.

Only pregnant patients who have been exposed to Zika at any gestational age are eligible for enrollment and they are enrolled anonymously. Furthermore, “only well-documented cases enrolled before any additional screenings are considered eligible.” Dr. Panchaud stressed the importance of enrolling patients that have tested positive for the virus, as well as patients who did not.

Dr. Panchaud stated that when it comes to collecting data, it needs to be systematic “so that we can capture the distribution of this screened population and compare them among countries.” In addition, it also needs to be prospective, “so we can decrease the associated bias.” In order to achieve all of this, the researchers are using a web application called REDCap. At the time of enrollment, “baseline information on sociodemographic characteristics” as well as other risk factors are collected. The researchers then collect follow-up information within 12 weeks after birth, regarding pregnancy, fetal, and neonatal outcomes. Then, according to Dr. Panchaud, “the study population is stratified for analysis based on gestational age and prenatal screening test status at enrollment.” Pregnancy outcomes that test positive for Zika are compared with the control group of pregnancies which, despite having been exposed to the virus, tested negative.

So far, the registry consists of 103 enrollees, 55 with follow-up, and “33 collaborators [who] are entering data or [are] ready to do so, stemming from 20 different countries from both endemic and non-endemic areas.”

Dr. Panchaud and colleagues are working to promote awareness and increase enrollment. Constant sharing of data would enable researchers to more accurately estimate the magnitude of the risks associated with maternal-fetal Zika transmission.
First International Conference on Zika Virus
Exclusive interview with Contagion®
Session 1: Zika Epidemiology
Congenital Zika Syndrome: Time to Centralize Data in an International Registry
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