US Zika Pregnancy Registry: How to Participate

Margaret Lampe, RN, MPH


July 15, 2016

Editorial Collaboration

Medscape &

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Hello. I'm Margaret Lampe, a nurse scientist with the Pregnancy and Birth Defects Task Force for CDC's 2016 Zika virus response.

Although Zika virus was discovered more than 70 years ago, microcephaly and other birth defects associated with Zika infection during pregnancy are recently recognized phenomena. In April 2016, CDC experts concluded that Zika virus infection during pregnancy causes microcephaly, a severe birth defect, and other serious brain abnormalities.[1] However, the timing, absolute risk, and full range of outcomes of asymptomatic and symptomatic Zika virus infection during pregnancy are not yet well understood.

To understand more about Zika virus infection and the risk for adverse outcomes during pregnancy, CDC established the US Zika Pregnancy Registry. CDC is working with state, tribal, local, and territorial health departments to collect information about pregnancy and infant outcomes following Zika virus infection. Pregnant women are eligible for the registry if they have any laboratory evidence of possible Zika virus infection during pregnancy—positive or equivocal test results—regardless of whether they have symptoms. And congenitally exposed infants born to these women are also eligible for the registry.

Healthcare providers, particularly those caring for pregnant women or infants, are essential to the success of the registry. CDC encourages you and your clinical colleagues to work directly with health departments to report information to the registry. Here are four steps healthcare providers can take to participate in the registry:

  • First, identify pregnant women with potential exposure to Zika virus and infants with suspected congenital exposure to Zika virus. Ask pregnant women about travel to an area with active Zika transmission or whether they have had sexual contact with a man who lives in or has traveled to areas with Zika. Contact your health department to arrange laboratory testing for Zika virus infection. You can access clinical guidance and testing algorithms for pregnant women and infants who may have been exposed during pregnancy or the periconception period on CDC's website.

  • Second, report information about pregnant women with any laboratory evidence of Zika virus infection, as well as information about infants with any laboratory evidence of congenital Zika virus infection. You can use reporting forms provided by your health department.

  • Third, collect pertinent clinical follow-up information about these pregnant women and infants and provide it to your health department or directly to CDC Registry staff if asked to do so by your health department. Inclusion of infants who appear healthy at birth is important because short and long-term effects of in utero exposure remain unknown.

  • Finally, quickly notify your health department or CDC Registry staff of adverse events, such as spontaneous abortion, fetal death, or birth defects.

You may be wondering: What will the registry tell us, and how is that information relevant to me and my colleagues? CDC is rapidly translating new findings from the registry into messages for the public and updating clinical guidance. For example, CDC recently updated the recommended testing algorithms for pregnant women to reflect accumulating data on fetal abnormalities, including microcephaly, intracranial calcifications, and brain and eye abnormalities.

In May 2016, CDC began reporting the total number of pregnant women with Zika virus infection from both the US Zika Pregnancy Registry and the Puerto Rico Zika Active Pregnancy Surveillance System.[2] And in June 2016, CDC began reporting adverse outcomes, including live-born infants with birth defects and pregnancy losses with birth defects. The numbers are now updated weekly and available on CDC's Zika website.

Data from the US Zika Pregnancy Registry will be critically important for arming you with the information you need to counsel and care for pregnant women and their infants. CDC continues to evaluate all available evidence, including data from the registry, to update clinical guidance. Data from the registry will also be used to plan services for pregnant women and families affected by Zika virus and to improve prevention of Zika virus infection during pregnancy.

CDC's top priority for the Zika response is to protect pregnant women and women of childbearing age. We hope you will join us in this effort, and we thank you for all that you do on behalf of pregnant women and their families.

For more information about Zika, including clinical guidance and tools for healthcare providers, please visit CDC's website at For more in-depth information about participating in the registry, you can contact your state, territorial, tribal, or local health department, or visit CDC's US Zika Pregnancy Registry.

Web Resources

Zika Virus—For Healthcare Providers

US Zika Pregnancy Registry