US Zika Pregnancy Registry

Zika virus infection during pregnancy can cause microcephaly and other severe fetal brain defects. Infection during pregnancy has also been linked to adverse outcomes including pregnancy loss, and eye defects, hearing loss, and impaired growth in infants. Despite these observations, many questions remain about the risks of Zika virus infection during pregnancy. Information about the timing, absolute risk, and spectrum of outcomes associated with Zika virus infection during pregnancy is needed to direct public health action related to Zika virus and guide testing, evaluation, and management.

To understand more about Zika virus infection, CDC established the US Zika Pregnancy Registry and is collaborating with state, tribal, local, and territorial health departments to collect information about pregnancy and infant outcomes following laboratory evidence of Zika virus infection during pregnancy. The data collected through this registry will be used to update recommendations for clinical care, to plan for services for pregnant women and families affected by Zika virus, and to improve prevention of Zika virus infection during pregnancy. 

For questions about the registry please email: [email protected] or call 770-488-7100.

Eligibility for the Registry

 People who are eligible for inclusion in the Registry include

• Pregnant women in the United States with laboratory evidence of Zika virus infection (positive or inconclusive test results, regardless of whether they have symptoms) and prenatally or perinatally exposed infants born to these women.
• Infants with laboratory evidence of congenital Zika virus infection (positive or inconclusive test results, regardless of whether they have symptoms) and their mothers.

Health Departments: How to Participate

State, tribal, local, and territorial health departments can participate in the US Zika Pregnancy Registry. They can

• Identify pregnant women and infants eligible for Zika virus testing in accordance with state or CDC guidelines.
• Coordinate testing at a state public health laboratory or CDC for those eligible.
• Report information about pregnant women in the United States with laboratory evidence of Zika virus infection (positive or inconclusive test results, regardless of whether they have symptoms) and information about prenatally or perinatally exposed infants born to these women, including infants with congenital Zika virus infection
• Collect enhanced surveillance data about pregnant women and their infants who are eligible for the Registry.
• Work with CDC to determine state-specific methods for collecting and sharing data.

Healthcare Providers: How to Participate

CDC and state, tribal, local, and territorial health departments request that healthcare providers participate in the US Zika Pregnancy Registry.

Obstetric healthcare providers can:

• Report information about pregnant women with laboratory evidence of Zika virus to their state, tribal, local, or territorial health department.
• Collect pertinent clinical information about pregnant women and their infants on the Pregnancy and Zika Virus Disease Surveillance forms.
• Provide the information to state, tribal, local or territorial health departments or directly to CDC registry staff if asked to do so by local health officials.
• Notify state, tribal, local, or territorial health department staff or CDC registry staff of adverse events (e.g., spontaneous abortion, termination of pregnancy).

Pediatric healthcare providers can:

• Identify and report suspected congenital Zika virus exposure to their state, tribal, local, or territorial health department for possible testing.
• Collect pertinent clinical information about infants born to women with laboratory evidence of Zika virus infection or infants with congenital Zika virus infection.
• Provide the information to state, tribal, local or territorial health departments or directly to CDC registry staff if asked to do so by local health officials.
• Notify state, tribal, local, or territorial health department staff or CDC registry staff of adverse events (e.g., perinatal or infant deaths).

Healthcare providers practicing in Puerto Rico should report information to the Puerto Rico Zika Active Pregnancy Surveillance System (ZAPSS) rather than to the US Zika Pregnancy Registry.

Fact Sheets