Frequently Asked Questions (FAQs)

 

What is BD-STEPS?

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.

How does the study work?

We talk to women who had pregnancies affected by birth defects as well as women whose babies did not have birth defects. We ask about their pregnancy experience and health. The collected information is then analyzed to answer the questions that were asked. 

What does the study involve?

An interviewer will call you in about one to two weeks to begin the interview or set up a good time for the interview. The interview lasts about 45 minutes, and it can be split into segments to fit your schedule.

How did you get my name?

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.

What will I be asked in the interview?

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.

What if I do not want to answer or can’t remember?

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.

Who funds the study?

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 and North Carolina.

What will the results show?

Since the study looks at a large group of women, this means 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

What will the researchers do with the results?

Results from the study will teach us more about the potential factors that might raise or lower the risk of having a baby with birth defects. When we know the causes of birth defects, we can develop public health policies and raise awareness of the things parents and potential parents can do to prevent them.

Why is this study so important?

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.

What do I get for participating?

We have enclosed a $20 gift card as a token of appreciation for your time and interest. The gift card is yours to keep whether or not you take part in the interview. If you choose to participate in other parts of the study, you have the chance to receive more gift cards.

Can you explain about newborn blood spots?

Within the first few days after a baby is born, a few drops of blood are collected from an infant heel stick and dried on a card to test for rare conditions. After the tests are done, usually some of the spots on the card are left. If you live in a state that allows us to retrieve those spots, you may be asked for permission to share some of your child’s blood spot. The blood spot samples will allow us to study genetic (inherited) factors that may contribute to the causes of birth defects.

Do I have to participate?

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.

How will my privacy be protected?

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 children’s health 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.

Whom can I call if I have more questions?

Please see the contact information available on the contact page.