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Developing the Data To Help Prevent Birth Defects


  • Birth defects are the leading cause of infant mortality in the United States.
  • CDC has teamed with Abt to collect the data needed to identify risk factors for birth defects.
  • CDC uses the data for key analyses to inform policy.
The Challenge

Birth defects are the leading cause of infant mortality in the United States, accounting for 20 percent of all infant deaths in 2018. Approximately 3 percent of babies born in the United States are affected by a major genetic or structural birth defect. However, because individual birth defects are relatively rare, a large study is needed to identify and evaluate specific defects. To address this problem, the Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD) collaborated with birth defects surveillance registries across the United States to develop and implement the National Birth Defects Prevention Study (NBDPS) and its follow-on study, the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS). This collaborative effort collects enough data to provide an unprecedented opportunity to evaluate risk factors for birth defects and patterns in the occurrence of birth defects. Building on our experience conducting data collection and coding for NBDPS, Abt Global provides data collection (through telephone interviews), survey response coding, and project management services for BD-STEPS.

The Approach

In support of BD-STEPS data collection, Abt is:

  • Tracking and tracing identified cases and controls for most Centers and recruiting subjects to the study. 
  • Conducting Computer-Assisted Telephone Interviewing. (CATI) for all Centers: Abt’s highly trained interviewers conduct interviews with approximately 200 eligible subjects per Center each year. Our interviewers are trained to use great sensitivity in calling, as many mothers may be addressing significant health problems affecting their children or may have experienced the recent loss of a pregnancy or death of a child.
  • Coding of open-ended survey responses for the CATI survey data from all BD-STEPS Centers. Abt’s expert coding team is using the Slone Epidemiology Center’s electronic drug dictionary and eight different study-specific coding lists, such as medical conditions, insurance type, language, tribes and country of birth. 
  • Providing other scientific support to CDC for BD-STEPS, as requested.
The Results

These data are used by CDC to inform health policy.