T1 - Q & A Introductory Sheet -English

Questions and Answers
About the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS)
One in every 33 babies

Who funds the study? CDC funds the Centers for Birth

in the United States is

Defects Research and Prevention (CBDRP) that work together

born with a birth defect.

on the study. Participating CBDRP sites include: Arkansas,

Birth defects are one of

California, Georgia (CDC), Iowa, Massachusetts, New York

the leading causes of

and North Carolina.

death in the first year of
life and can affect how a

How did you get my name? Birth defects are a serious

child’s body looks, works,

public health concern, and state laws allow each study site to

or both. While we know

collect information on pregnancies affected by a birth defect.

the causes of some birth

This is how most women are identified in the study. Women

defects, we do not know

whose babies do not have birth defects are chosen randomly

what causes most of

from a group of women who gave birth in the same year.

them. Researchers across
the nation are teaming

What will the results show? Since the study looks at a large

up with the Centers for

group of women, this means findings will apply to “the average

Disease Control and Prevention (CDC) to find answers through

woman” rather than any specific individual. There are many

the Birth Defects Study to Evaluate Pregnancy exposureS

possible results. We may uncover:

(BD-STEPS).

• Risk factors, things that raise the risk for birth defects
• Protective factors, things that lower the

What is BD-STEPS? BD-STEPS is a nationwide effort to find

causes of birth defects by collecting information from women

• Neutral factors, things that neither raise nor lower the risk

chances of having a baby with birth defects

who have recently been pregnant. We study many different
types of birth defects, including cleft lip, spina bifida, and

What will you do with the study findings? We publish

heart defects.

findings in medical journals. Because birth defects are of great
interest, findings are often covered in the news as well. We

How does the study work? We talk to women who had

also will publish findings in a yearly electronic newsletter that

pregnancies affected by birth defects as well as women

we will make available to women who take part in the study.

whose babies did not have birth defects. We ask about their
pregnancy experience and health. We also want to study the

Why is this study so important? Understanding the causes of

role genetic (inherited) factors play in the health of a baby. That

birth defects can help us prevent them. The size and scope of

is why we ask some mothers to participate in a second part

this study will provide important clues to help us in our journey

of the study that includes giving approval for us to use a small

to ensure that every child is born with the best health possible.

amount of leftover heel stick blood that was already collected
from the baby at birth.
Why do you need information about genes? We hope
to study genetic material to see if certain forms of genes are
more likely to be present when birth defects occur.
U.S. Department of Health and Human Services
Centers for Disease Control and Prevention

Questions and Answers
What You Need to Know About Participating
What does the study involve?

things in your interview: your recent pregnancy and the

1. An interviewer will call you in about one to two weeks

month before you became pregnant, past pregnancies,

to begin the interview or set up a good time for the

your general health, family background, lifestyle, work,

interview. The interview lasts about 45 minutes, and

and prescription and non-prescription medicines taken.

it can be split into segments to fit your schedule.

We will also ask a few questions about your baby’s father.

2. After the interview is complete, we hope you will
participate in more parts of the study. For example,
you might be asked to participate in one part of the
study that focuses on the role genes play in health or
another part of the study that asks for your consent
to review some of your medical records.
Where is the study conducted? You can participate in
all parts of the study from your home.
How will the study benefit my family? Study results
will not directly benefit you or your family. However,
many women feel good about helping to find causes

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.
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
researcher on this study. No one else may look at your

of birth defects.

data, including insurance companies, even if requested

Are there any disadvantages to participating? Some

computer files are password protected.

women interviewed find it emotionally difficult to discuss

by a court of law. We keep records under lock and key. All

their pregnancies. There is no other likely disadvantage.

Study contact information. If you have any questions,

What do I get for participating? We have enclosed a

743-7324, or email us at [email protected]. You can

$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

please feel free to call us at our toll free number, 1-888also visit www.bdsteps.org for more information about the
study. You can reach your local BD-STEPS researchers with
the following information:

other parts of the study, you have the chance to receive
more gift cards.
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.
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
CS255149-A