DoD Birth Defects Registry Tracks Health of Military Infants
WASHINGTON, February 12, 2001 (GulfLINK) - The widely reported suspicion that birth defects found in children of veterans are associated with the parents' service in the Gulf War is one example of the concern military people feel about the possible consequences of harmful exposures they might face in wartime. In the past, the Department of Defense has not had the records to verify a possible increase in birth defects, or to relate any birth defects to a possible cause. To be better prepared for a similar situation after future deployments, DoD created the National Department of Defense Birth Defects Registry at the DoD Center for Deployment Health Research, Naval Health Research Center in San Diego, Calif. The registry, established Jan. 1, 1999, now maintains the health records of what has become a worldwide military birth surveillance program.
"It's really a matter of being able to have data to answer important questions before they come up," says Navy Lt. Cmdr. Margaret Ryan, principal investigator for the program. "And it's not a DoD question specifically. The civilian community has the same kinds of concerns about reproductive hazards."
There are some 3,000 to 5,000 different birth defects, and they are the leading cause of infant death. There is no nationwide birth defects registry even though some states have established registries. These registries collect information on children with birth defects. Because few state registries gather birth defects data from military hospitals, these registries can't easily be used to study birth defects among military families. Also, civilian hospital data often can't be linked to military records because civilian hospitals may not release social security numbers or other personal identifying information for privacy reasons.
"Birth defects and other adverse reproductive outcomes are common and unfortunate events that often provide very vivid evidence of the fragility of human conception and development," said Michael Kilpatrick, M.D., deputy director of medical readiness in the special assistant's office for Gulf War illnesses, medical readiness and military developments.
The DoD registry gathers live birth information from all the uniformed services' DoD electronic inpatient and outpatient records. That includes all military facilities and data from civilian hospitals when the medical care is funded by TRICARE. A team from the Naval Health Research Center works out of one of the largest DoD medical facilities, the Naval Medical Center, San Diego, to personally review medical charts, clinic records and consultations relating to infants born at the center, manually double-checking the accuracy of the electronic input.
The registry tracks 45 major birth defect categories using the same definitions and codes used by the state registries and the Centers for Disease Control and Prevention. With this information, DoD can determine which birth defects are most common, provide information about any increases in the incidence of specific birth defects and compare the rates of birth defects among different groups. For example, researchers can compare the rates of birthdefects between deployed servicemembers and non-deployed servicemembers.
"One value of the registry is its potential to identify exposures not previously known to be associated with birth defects. That can guide future research," Ryan says.
The registry's mission includes providing annual figures on birth defect prevalence. A preliminary report was recently released, presenting information about the more than 46,000 live births the uniformed services reported between Jan. 1, 1999, and June 30, 1999. Ryan says this is preliminary information, but it does reveal some general trends in military births to compare with the general population.
"Nationally, about three to five percent of live births will have a major birth defect," Ryan says. "What we have seen in military families is a prevalence of four percent. And looking at the proportion of which defects are seen, it looks parallel to what we see in the civilian states that report birth defects."
The most common birth defects, in military or civilian families, are congenital heart problems. Ryan says the data compiled by the registry will help scientists in their search for the causes of these and other birth defects. Currently, she says very few exposures are known to be associated with birth defects.
"Certain medications like thalidomide are linked to defects," Ryan says. "Certain antibiotics are associated with hearing problems. But the vast majority of the time we cannot point to a particular exposure that caused a defect."
She says science may be years away from definite answers, but that finding those answers is of the utmost importance. Her medical experience has helped her to understand the frustration of parents whose children are born with special challenges.
"I did my internship in OB/GYN," Ryan says. "I certainly feel for people who have babies with birth defects and are struggling.... From my clinical experience, everyone who has a child with a birth defect questions what caused that defect. If they are Gulf War veterans, if they are not Gulf war veterans, if they are a civilians, whoever they are. Anyone who has a child with a birth defect wants to find a cause. Unfortunately and frustratingly, very, very few people know with certainty what caused a birth defect."
Still, she has no doubt that the National Department of Defense Birth Defects Registry is an important tool for monitoring birth defects within the DoD. The data collected can be used to monitor changes over time or differences in various geographic locations. It will also provide baseline rates for future research when hazardous environmental exposures are suspected.
"We knew we needed to look at the Gulf War deployment as a potential risk for birth defects," Ryan says. "If we had the registry set up then we could have pulled data fairly quickly. When people raise the question in the future deployments, we'll have data available."