Giving back to Iowa's families: Registry educates, collects data, conducts research on birth defects

Photo by Kirk Murray.

Their sweet helplessness brings out people’s protective instincts. We feed them, bundle them up, and hold them close. But just as important as providing for their care after they’re born is making sure they’re healthy from the start.

That’s the goal of the Iowa Birth Defects Registry. The registry’s group of researchers and educators are part of the Colleges of Medicine and Public Health. They track birth defects in the state of Iowa, participate in a number of regional and national studies, and work to educate people of child-bearing age about the ways to prevent birth defects.

Since 1983, the registry has collected data on pregnancies of Iowa residents affected by a birth defect. These include live and stillborn babies and elective pregnancy terminations. A birth defect is often defined as a structural or metabolic abnormality that can adversely affect a child’s health and development. Some examples include chromosomal abnormalities, such as Down syndrome; congenital heart defects, such as transposition of the great vessels resulting in a “blue baby”; neural tube defects, such as spina bifida; and orofacial defects, such as cleft lip and cleft palate.

Iowa’s registry is one of only 10 in the nation, and the only one in the Midwest, to conduct “intensive surveillance,” the most comprehensive mode of data collection.

“We go out and collect the information from medical records as opposed to some states that simply compile data from a check box on a birth certificate,” says Paul Romitti, director of the Iowa Birth Defects Registry. “This provides us with the most timely reporting on birth defects. It’s also the most expensive kind of data collection. Only 10 percent of our funding is provided by the state. The rest must be obtained through grants.”

Six field representatives review hospital records to gather initial information on Iowa birth defects. Research staff may follow up with intensive interviews with mothers of affected babies and collect cheek samples from family members. Iowa’s registry is one of only eight states awarded an “A” rating by the Pew Commission in a recent evaluation of monitoring effort quality.

The formation of birth defects registries may occur when health care workers note a grouping of babies born with abnormalities.

“The birth defect registry in Atlanta was created in the wake of the thalidomide experience,” says Romitti, referring to the morning-sickness medication taken by pregnant women in the late 1950s and early 1960s that resulted in numerous birth defects.

Iowa’s registry, modeled after the Atlanta registry, was created in part because of University of Iowa researchers’ expertise and interests. The executive committee that oversees the registry’s activities includes faculty members from the Departments of Pediatrics, Obstetrics and Gynecology, Biostatistics, and Epidemiology, as well as representatives from the Iowa Department of Public Health. Iowa’s research expertise is particularly strong in the areas of cleft lip and palate, Down syndrome, neural tube defects, and cardiac defects.

As well as working with Iowa researchers, the registry participates in a number of multi-center studies. The Centers for Disease Control and Prevention (CDC) in Atlanta relies on Iowa’s data for the National Birth Defects Prevention study and a Prevention of Neural Tube Defects study. Data from Iowa’s registry also is used at Emory University as part of a multi-center Down syndrome project.

But research isn’t the registry’s only goal.

“We try to give back to the state through education and outreach,” Romitti says.

And that’s where the work of Julie Hathaway-Nepple comes in. Her job, as the registry’s education and outreach coordinator, is to translate findings about birth defects prevention into information that the public can use. A special challenge of her position is that she has to encourage healthy behaviors among young women who aren’t intending to get pregnant.

“According to the CDC, 50 percent of all pregnancies are unplanned,” she says. “And in an average week in Iowa, four to five pregnancies are affected by a birth defect.”

One of the registry’s education efforts piggybacks on the CDC’s campaign to encourage women to take a multivitamin with folate and folic acid, which has been found to be important in preventing neural tube defects. To encourage public awareness of birth defect prevention, including the use of folic acid and discouraging cigarette smoking, Hathaway-Nepple and other registry staff serve on state and local committees, provide lectures for health care providers and students, and get the word out through press releases, pamphlets, and the registry’s annual report. Surveillance, research, and/or educational activities have touched each of Iowa’s 99 counties.

“Our goal is to give back to the families of Iowa,” she says.

For more information about the Iowa Birth Defects Registry visit their web site at www.public-health.uiowa.edu/birthdefects/index.html or call Julie Hathaway-Nepple at (33)5-9698.

Article by Linzee Kull McCray