National BD Prevention Study, BD, NCBDDD, CDC

Birth defects are common – about 1 in 33 babies are affected. However, in most cases, the causes of birth defects are unknown. Scientists believe that most birth defects are caused by a complex mix of factors including genetic, environmental and lifestyle factors. But for the most part, these factors are not understood.

Although birth defects are common, it is rare to see many babies born with the same birth defect. Before the Centers for Birth Defects Research and Prevention (CBDRP) began in 1997, many of these birth defects had yet to be studied. The Centers were created to combine efforts and increase the capacity of state programs to carry out research. This research will increase our understanding of the causes of birth defects and provide information that can be used to prevent birth defects. Currently, CDC has set up centers in Arkansas, California, Iowa, Massachusetts, New York, North Carolina, Texas, and Utah. [See map and links below]. The centers are established in states with existing birth defect programs that have nationally recognized expertise in birth defects surveillance and research. All centers work together on the National Birth Defects Prevention Study (NBDPS). CDC coordinates the CBDRP and participates in the National Birth Defects Prevention Study (NBDPS) as the ninth study site. In addition, each center has its own center-specific research projects.

National Birth Defects Prevention Study (NBDPS)

The NBDPS is one of the largest case-control studies ever done on the causes of birth defects. Case mothers are women who have had babies or pregnancies affected by birth defects and control mothers had babies with no birth defects. The goal for each center is to talk to 300 case mothers [Table 1] and 100 control mothers per year. The study has three parts: 1) specialized doctors review all cases, 2) talk to the mothers, and 3) collect cheek cell samples from the families. The doctors make sure that the defect the child has belongs in our study. When we talk to the mother we ask questions about the pregnancy. Things we ask about are: earlier pregnancies, illnesses, medications, work place, lifestyle factors, etc. The cheek cells that are collected from the families are used for genetic studies.

The NBDPS started interviewing mothers of children born after October 1, 1997 and is ongoing. It provides a rich data source for rare birth defects. Many families worry about the health of their babies and this study will address some of their questions. By helping with this study these families hope we can find some of the answers.

"I can't imagine not participating in this study. My husband and I thought we had planned and prepared for everything during my pregnancy but at 30 weeks gestation, we were shocked to find out that our baby had a life threatening birth defect. We didn't have any family history of birth defects and so we asked WHY this had happened to our baby.

The doctors could only guess about the cause of the birth defect. No one had any clear answers. This research study is a vital step in the right direction to answering those unanswered questions of 'Why?' and 'How can this be prevented?' Luckily, our little boy is doing well today thanks to an operation done immediately after he was born. Research is essential to learning and if doctors can learn something from my pregnancy, my son's condition, or our family genetics then I feel it is our duty to other families to contribute as much as we can to this study. If my family's contribution can help prevent birth defects in other children, then the time it took to complete the study was worth it!"

-- A study participant

Date: January 03, 2008
Content source: National Center on Birth Defects and Developmental Disabilities