Objective: We assessed the practices of U.S. population-based birth defects surveillance programs in addressing current and emergent public health needs.
Methods: Using the CDC Strategic Framework considerations for public health surveillance (i.e., lexicon and standards, legal authority, technological advances, workforce, and analytic capacity), during 2012 and 2013, we conducted a survey of all U.S. operational birth defects programs (n=43) soliciting information on legal authorities, case definition and clinical information collected, types of data sources, and workforce staffing. In addition, we conducted semi-structured interviews with nine program directors to further understand how programs are addressing current and emergent needs.
Results: Three-quarters of birth defects surveillance programs used national guidelines for case definition. Most birth defects surveillance programs (86%) had a legislative mandate to conduct surveillance, and many relied on a range of prenatal, postnatal, public health, and pediatric data sources for case ascertainment. Programs reported that the transition from paper to electronic formats was altering the information collected, offering an opportunity for remote access to improve timeliness for case review and verification. Programs also reported the growth of pooled, multistate data collaborations as a positive development. Needs identified included ongoing workforce development to improve information technology and analytic skills, more emphasis on data utility and birth defects-specific standards for health information exchange, and support to develop channels for sharing ideas on data interpretation and dissemination.
Conclusion: The CDC Strategic Framework provided a useful tool to determine the birth defects surveillance areas with positive developments, such as multi-state collaborative epidemiologic studies, and areas for improvement, such as preparation for health information exchanges and workforce database and analytic skills. Our findings may inform strategic deliberations for enhancing the effectiveness of birth defects surveillance programs.