The Centers for Disease Control and Prevention and birth defects programs in many states are working together on this study to discover the causes of birth defects. To do this, we need to speak with mothers of infants without birth defects as well as women who have had a pregnancy affected by a birth defect. We are talking to hundreds of mothers from each state in the study to find out what their pregnancies were like. If you have been invited to take part in the study, we hope you will consider participating. We believe you can help us to discover the causes of these birth defects through your answers to the questions we have developed and through the collection of your family’s DNA samples.
Participation is critical to the study. Research results are not considered reliable if only a small percentage of selected people participate. As you can imagine, if people with certain exposures decide not to participate, it is much harder for us to study that exposure. Also, because this is a population-based study, we hope that the women we invite to participate are representative of the entire population. If some women do not participate, it may no longer be a sample that represents the larger population. Our study is different because the questions answered during the interview by each mother are added to diagnostic information from her medical records. Also, our study collects DNA to look at the relationship between genes and other exposures. It is our hope that the information each woman gives us will benefit many people in the future.
How are study participants selected?
Part of our on-going work to find causes of birth defects includes studying them when they occur. State law allows us to track cases of birth defects. This is how we find most women in the study. Women whose babies do not have birth defects were selected randomly from women who gave birth in the same area during the same year. These families are contacted to find out if they want to participate in the study.
If I have been selected to participate, what do I do?
If you are interested in participating, please first make sure we have the correct contact information for you. The packet you received should have information on how to send us your current address and phone number.
About two weeks after you receive the packet, an interviewer will call you to set up a convenient time for the phone interview. She will make sure that you understand the most important points about the study, its risks and benefits.
My baby doesn’t have a birth defect; why should I participate?
The answers and cheek cell samples provided by mothers of babies with no birth defects (control mothers) will be compared to answers and cheek cell samples provided by mothers of babies affected by birth defects (case mothers). If case mothers report exposure to something more often than control mothers, this could mean that the exposure is related to the birth defect. An exposure can be something a person eats, a drug or medical treatment, or something used on the job. DNA from cheek cell samples allows us to look at the role of genetic factors in birth defects, especially those that interact with other exposures.