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Frequently Asked Questions

  • What is BD-STEPS?​
    • BD-STEPS is a nationwide effort to investigate factors related to why birth defects happen 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 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 consent to use blood spot samples that were previously collected by the Division of Public Health from your 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.
  • 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.
  • How did you get my name?
    • Because birth defects are a serious diagnosis that affect babies, state laws allow public health agencies to collect information on pregnancies affected by a birth defect. This is how most women are identified in the study. BD-STEPS also includes a group of women whose babies do not have birth defects and were selected among women who gave birth in the same year using birth certificate files.
  • My baby has a birth defect and I would like to participate in BD-STEPS. How can I participate?
    • The BD-STEPS study has a protocol to identify women who are eligible to participate. Eligibility depends on when a woman was pregnant, what type of birth defect her baby has, and where in North Carolina she lives. The NC Center for Birth Defects Research and Prevention sends letters in the mail and makes phone calls to every woman who may be eligible for BD-STEPS. Women cannot self-enroll in the study.
  • How will my privacy be protected?
    • All information collected by the study is protected using privacy and confidentiality standards. We will never use any names in reports or publications. No one outside of our research study may look at your data, including insurance companies or other government agencies, even if requested by a court of law.
  • I received a secure, protected email message from BD-STEPS. Did this come from the BD-STEPS Study?
    • NCCBDRP sends secure email messages to some participants who are already participating in BD-STEPS to invite them to take part in additional study activities. We began sending secure, protected email messages to study participants in February 2021 as part of UNC Chapel Hill’s institutional policy to maintain strict privacy and confidentiality standards. Participants who receive a secure email from bdsteps@unc.edu, can open the message by clicking on the blue box that says, “Read the message.”  Next, open the message by signing into your existing Google, Microsoft, or Yahoo! account. Otherwise, you can request a one-time passcode to open the message. Learn more about protected messages sent by research studies on the UNC Chapel Hill Encrypted Email page.

For additional information on BD-STEPS, see BD-STEPS FAQ

BD-STEPS Study Timeline

  • Recruitment: Eligible people will receive an introductory packet by mail. This includes a welcome letter and more information about the BD-STEPS study.
  • Interview: Participants complete a 45-55 minute telephone interview.  Following the core interview, some participants are invited by email to participate in an additional online survey.
  • Additional study components: After completing the core interview, participants receive a “thank you” letter with a gift card by mail. This mailing also includes consent forms and information about additional, optional study components.
  • Study completion: After consent forms are received, participants receive another “thank you” letter and gift card by mail.