Registries helping CDC track pregnant women infected with Zika virus

As of mid-October, about 900 pregnant women in the U.S. have been identified with laboratory evidence of possible Zika virus infection, says CDC’s Margaret Honein.

The Centers for Disease Control and Prevention is working collaboratively with state, local and territorial public health departments on surveillance of pregnant women that have laboratory evidence of possible Zika virus infection.

The CDC has established the U.S. Zika Pregnancy Registry and the Zika Active Pregnancy Surveillance System in Puerto Rico to provide comprehensive monitoring of pregnant women and infant outcomes.

The registries are helping the agency to better understand the range of adverse outcomes that occur in infants and when in pregnancy those risks are highest for microcephaly and other severe birth defects caused by the virus.

According to Margaret Honein, chief of the CDC’s Birth Defects Branch and co-lead of its Pregnancy and Birth Defects Task Force, the data collected through the registries will be used to update recommendations for clinical care, plan for services and support for pregnant women and families affected by Zika, as well as improve prevention of infection during pregnancy.

“The U.S. Zika Pregnancy Registry is coordinated here at CDC,” she says, adding that the data is managed in a system called the Research Electronic Data Capture (REDCap), developed by Vanderbilt University. “We receive voluntary reports from public health departments with possible cases, and we manage the data on our end.”

Honein, an epidemiologist, notes that the Zika virus can be passed from a pregnant woman to her fetus, which can cause devastating birth defects.

“We think that there will likely be a range of infant outcomes, and we don’t yet understand the full range of those outcomes yet,” she observes. “Our top priority is protecting pregnant women and preventing Zika virus infections because of the devastating outcomes that we know can occur.”

As of October 13, Honein says there are 899 pregnant women with laboratory evidence of possible Zika virus infection in the United States and District of Columbia, and 1,927 in the U.S. territories. In the U.S. and D.C., 23 live-born infants with birth defects and five pregnancy losses with birth defects have been reported—the numbers are based on information provided to the pregnancy surveillance systems.

“How this is managed at the state and local level varies a lot from jurisdiction to jurisdiction, but electronic health records are being used at many locations,” according to Honein.

When it comes to tracking pregnant women affected by Zika, the CDC in August and September made awards to state, local and territorial health departments for what Honein calls “rapid birth defects surveillance” as well as to “work on the pregnancy registries.”

Also See: CDC funds Zika surveillance systems in 40 states, territories

Earlier this month, Congress allocated $1.1 billion in supplemental funding to fight Zika. Of that, $394 million will go to the CDC.

“With the supplemental funding that Congress has authorized, we’re going to be able to provide a little bit more adequate support,” adds Honein. “So, we think this will be incredibly helpful for getting complete, accurate, and timely data.”

Zika is primarily spread by the bite of an infected Aedes species mosquito. However, the virus also can be transmitted through sex.

“It’s important to follow CDC guidance and screen all pregnant women for possible Zika virus exposure,” Honein concludes. “At every prenatal visit, healthcare providers should be asking pregnant women about travel to areas with active Zika virus infection or any sexual partners who may have travelled to an area with active Zika virus transmission—and then for those who have exposure, testing.”

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