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Public Health Practice of Population-Based Birth Defects Surveillance Programs in the United States
Cara T Mai1, Russell S Kirby, Adolfo Correa
1Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia (Dr Mai); College of Public Health, University of South Florida, Tampa (Dr Kirby); University of Mississippi Medical Center, Jackson (Dr Correa); and School of Public Health, University of Illinois at Chicago (Drs Rosenberg, Petros, and Fagen).
Insights
Most US states monitor birth defects through population-based surveillance systems, collecting vital data to guide public health actions and improve infant health outcomes. These systems track major malformations and other conditions, aiding in early intervention and prevention efforts.
Area of Science:
- Public Health Surveillance
- Reproductive Health
- Pediatric Health
Background:
- Birth defects are a major cause of infant mortality and disability in the US.
- Existing state surveillance systems monitor birth defects, but a comprehensive review is lacking.
Purpose of the Study:
- To assess current population-based birth defects surveillance practices across the United States.
Main Methods:
- A survey was distributed by the National Birth Defects Prevention Network to all US birth defects surveillance programs.
- The survey covered operational status, case ascertainment, data collection, utilization, and program challenges.
- A 100% response rate was achieved through follow-up reminders.
Main Results:
- 43 states conduct population-based birth defects surveillance, covering 80% of US live births.
- Seventeen programs use active case-finding, while 26 use passive case-finding.
- Active programs collect more extensive data, including family history and broader pregnancy outcomes.
Conclusions:
- Population-level data from birth defects surveillance programs are crucial for public health initiatives.
- Enhanced collaboration between state and national levels can improve data harmonization and program effectiveness.
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.
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