Public health practice of population-based birth defects surveillance programs in the United States

Cara T. Mai*, Russell S. Kirby, Adolfo Correa, Deborah Rosenberg, Michael Petros, Michael C. Fagen

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

15 Scopus citations


Context: Birth defects remain a leading cause of infant mortality in the United States and contribute substantially to health care costs and lifelong disabilities. State population-based surveillance systems have been established to monitor birth defects, yet no recent systematic examination of their efforts in the United States has been conducted. Objective: To understand the current population-based birth defects surveillance practices in the United States. Design: The National Birth Defects Prevention Network conducted a survey of US population-based birth defects activities that included questions about operational status, case ascertainment methodology, program infrastructure, data collection and utilization, as well as priorities and challenges for surveillance programs. Birth defects contacts in the United States, including District of Columbia and Puerto Rico, received the survey via e-mail; follow-up reminders via e-mails and telephone were used to ensure a 100% response rate. Results: Forty-three states perform population-based surveillance for birth defects, covering approximately 80% of the live births in the United States. Seventeen primarily use an active case-finding approach and 26 use a passive case-finding approach. These programs all monitor major structural malformations; however, passive case-finding programs more often monitor a broader list of conditions, including developmental conditions and newborn screening conditions. Active case-finding programs more often use clinical reviewers, cover broader pregnancy outcomes, and collect more extensive information, such as family history. More than half of the programs (24 of 43) reported an ability to conduct follow-up studies of children with birth defects. Conclusions: The breadth and depth of information collected at a population level by birth defects surveillance programs in the United States serve as an important data source to guide public health action. Collaborative efforts at the state and national levels can help harmonize data collection and increase utility of birth defects programs.

Original languageEnglish (US)
Pages (from-to)E1-E8
JournalJournal of Public Health Management and Practice
Issue number3
StatePublished - Apr 13 2016


  • Birth defects
  • Population-based
  • Public health practice
  • Surveillance

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Health Policy


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