Parent Information




What can you tell me about my child’s birth defect?

The Discoveries & Data Center provides information on individual birth defects: findings from our registry and research studies. You can also find out how common birth defects are in the US, California or any of California’s 58 counties. Use the blue bars in the upper right corner of every page to search for specific information

Help! I’m not a scientist…

bullet-1245773 Many of the terms we use on the site are defined in our glossary.
bullet-1245773 In addition to the study findings on the site, we have downloadable study summaries (marked with the PDF symbol) written for non-scientists.


I was asked to participate in one of your studies. Why should I? How do I know this is a legitimate organization?

To understand why birth defects occur, we try to reconstruct pregnancy events. Interviewing parents is the best way to do this—the detailed information we need is not available from your doctor or the medical records. Your participation may help other families in the future—the willingness of other parents to help scientists make major research breakthroughs, for example, uncovering the protective effect of folic acid.

To read the most recent National Birth Defects Prevention Study newsletters, click the links below.

pdf_logo-2825173 2005 NBDPS Newsletter
pdf_logo-2825173 2004 NBDPS Newsletter
pdf_logo-2825173 2004 Addendum
pdf_logo-2825173 2002 NBDPS Newsletter

If you have questions or concerns about participating, please contact us.

Can your studies tell me what caused our child’s birth defect? Because research findings are based on pooled data, they apply to “average” persons rather than any specific individual or family. Your physician or a genetic counselor can assess your personal situation and risk through detailed medical, pregnancy and family histories. Physical examination and possibly genetic/other testing may also shed light on your circumstances. Based on your unique findings, your health care provider can address possible causes of your child’s birth defect. Are many birth defects inherited? Relatively few birth defects are caused solely by inherited genes. The majority result from a combination of genes and non-genetic (environmental) factors. In most cases, science doesn’t yet understand which genes are involved, what other factors interact with the developmental process or how to identify susceptible pregnancies. Our continued research will help clarify these issues so answers can someday be incorporated into health care. Why do you use estimates for county data? Most counties have relatively small numbers of births. When dealing with statistics, smaller numbers generally yield less precise information. Therefore, estimates can provide a more accurate prediction of birth defects’ impact. I think there are more birth defects than there should be in my area. What does that mean? Birth defects are more common than most people realize, occurring in 1 in 33 births. Many factors can influence how many babies are identified with birth defects: Demographics—the proportion of mothers with higher or lower risk Prenatal diagnosis and pregnancy termination Access to health care services and medical specialists.

Rarely, environmental conditions are linked to birth defects increases—to substantiate this, we need to see very high rates (10 times more than expected) in the same or closely related conditions. Are birth defects being caused by environmental conditions in my area? Questions like this cannot be answered simply by looking at local rates. The only way to determine if environmental exposures are linked to birth defects is to examine them in large-scale scientific studies with detailed exposure information. Most environmental exposures are not confined to a single area. By combining data from women statewide, our studies provide the statistical precision to tease out the often subtle effects of specific exposures or risk factors. How do I get tested for the gene variants you describe?

These tests are not yet part of routine medical care. The significance of the gene variants is still being investigated, as well environmental factors that might interact with them.

What can I do to have a healthy baby? Take a daily multivitamin containing folic acid before you become pregnant.

Eat a healthy diet with plenty of protein and vegetables. Don’t smoke. Don’t drink alcohol or take drugs.

Be mindful of what you come into contact with at home and work. Many everyday exposures may be harmful.

I’m worried that information about my child is in your registry. How are you protecting our privacy?

We take our moral and legal commitment to guarding private information very seriously—read about our extensive safeguards to preserve confidentiality. pdf_logo-2825173

I read that smoking is linked to oral clefts—I feel guilty because I smoked while I was pregnant…

While it’s natural for parents to feel responsible for their children, they are almost never to blame for their child’s birth defects.

bullet-1245773 Because so little is known about birth defects causes, parents don’t have information they need during pregnancy.
bullet-1245773 Most women with a particular risk factor—such as smoking— still have healthy infants. Other factors such as genetics or different health behaviors also play a role.
bullet-1245773 Research findings apply to “average” people, not a specific person. Your doctor or a genetic counselor can help you assess risk factors in your unique situation.