BACKGROUND: Zika virus infection during pregnancy can cause severe fetal brain defects and is associated with other adverse pregnancy/birth outcomes. The full spectrum of consequences of Zika virus infection during pregnancy is unknown. In February 2016, the Centers for Disease Control and Prevention (CDC) began recommending Zika virus testing for all pregnant women potentially exposed to Zika virus. At the same time, CDC initiated the United States Zika Pregnancy Registry (USZPR) to assess the spectrum and proportion of adverse pregnancy and infant outcomes among women with possible Zika virus infection during pregnancy. We summarize the creation and activity of the USZPR.
METHODS: CDC partners with state, tribal, territorial, and local health departments to actively monitor all women with possible Zika virus infection during pregnancy (includes laboratory-confirmed Zika virus infection or serological evidence of a recent unspecified flavivirus infection). Data collected include laboratory results, symptom status, potential exposures, and pregnancy outcomes. Rapid data collection is conducted by CDC surveillance staff and jurisdictional health departments who communicate via phone and secure data transfer systems. New and updated cases are transmitted to CDC on a weekly basis; CDC accepts data in multiple formats to facilitate ease of data submission. Active data collection through health departments is supplemented with data collected through other CDC surveillance systems, such as ArboNET.
RESULTS: State, tribal, local, and territorial health departments from all US states, the District of Colombia, and four US territories participate in the USZPR. From February-December 2016, the USZPR actively monitored 1551 women with possible Zika virus infection during pregnancy. Among pregnancies followed, 999 have been completed; USZPR is working with jurisdictional partners to identify congenital defects or developmental delays in live-born infants through the first year of life. Of completed pregnancies, 41 had birth defects potentially related to Zika. Public reporting of data began in May 2016; an average of 42 pregnancies per week (range: 11-79) have been reported to the USZPR since May.
CONCLUSIONS: Using enhanced surveillance methods, the USZPR facilitates timely reporting of pregnancies with possible Zika virus exposure and outcomes associated with these pregnancies. The close communication of USZPR staff with health departments have enabled the success of this program. Rapid implementation of the USZPR has contributed to understanding the spectrum of outcomes potentially associated with Zika virus infection during pregnancy, informing clinical guidance, including testing and follow-up recommendations, and helping identify periods of risk during pregnancy.