Frequently Asked Questions

BD-STEPS is a nationwide effort to find causes of birth defects by collecting information from women who have recently been pregnant. We study many different types of birth defects, including cleft lip, spina bifida, and heart defects.

We talk to women who had pregnancies affected by birth defects as well as women whose pregnancies were not affected by birth defects. We ask about their pregnancy experience and health. We also want to study the role genetic (inherited) factors play in the health of the baby. That is why we ask some mothers to participate in a second part of the study that includes giving approval to use blood spot samples that were collected from your baby at birth.

We hope to study genetic material to see if certain forms of genes are more likely to be present when birth defects occur.

CDC funds the Centers for Birth Defects Research and Prevention (CBDRP) to work together on the study. Participating CBDRP sites include: Arkansas, California, Georgia (CDC), Iowa, Massachusetts, New York, North Carolina, and Texas.

Birth defects are a serious public health concern, and state laws allow each study site to collect information on pregnancies affected by a birth defect. This is how most women are identified in the study. Women whose babies do not have birth defects are chosen randomly from a group of women who gave birth in the same year.

Since the study looks at a large group of women, this means the findings will apply to "the average woman" rather than any specific individual. There are many possible results. We may uncover:

• Risk factors, things that raise the risk for birth defects
• Protective factors, things that lower the chances of having a baby with birth defects
• Neutral factors, things that neither raise nor lower the risk

We publish findings in medical journals. Because birth defects are of great interest, findings are often covered in the news as well. We also publish findings in a yearly electronic newsletter that we will make available to women who take part in the study.

Understanding the causes of birth defects can help us prevent them. The size and scope of this study will provide important clues to help us in our journey to ensure that every child is born with the best health possible.

You can participate in all parts of the study from your home or any private location you choose.

Study results will not directly benefit you or your family. However, many women feel good about helping to find the causes of birth defects.

Some women interviewed find it emotionally difficult to discuss their pregnancies. There is no other likely disadvantage.

No. There will be no harmful effects if you refuse. Your decision will not affect health care services or other benefits you or your family may receive.

The interview covers a wide range of topics about you and your pregnancy. Sometimes we ask you to answer in your own words. Other times, we will give you several possible responses to choose from. We will ask about the following things in your interview: your recent pregnancy and the month before you became pregnant, past pregnancies, your general health, family background, lifestyle, work, and prescription and non-prescription medicines taken. We will also ask a few questions about your baby’s father. Please look at the medicine sheet in this packet to help you remember the medicines you took around the time you became pregnant and in your first trimester.

You may skip any questions you wish. It is okay to say that you don’t remember. We want you to answer as accurately and honestly as possible.

We will never use any names in reports or publications. We will not give any information about you to anyone who is not an approved researcher on this study. No one else may look at your data, including insurance companies or other government agencies, even if requested by a court of law. We keep records under lock and key. All computer files are password protected.

Please see the contact information on the contact page.