CDC's Sudden Unexpected Infant Death Case Registry

In the United States, about 4,200 infants die suddenly and unexpectedly without an immediately obvious cause. Vital records are important for monitoring trends in sudden unexpected and unexplained infant deaths (SUID), but provide limited information about the circumstances and events surrounding these deaths. The Centers for Disease Control and Prevention (CDC) developed the SUID Case Registry to conduct state-level SUID surveillance that collects comprehensive information about the characteristics of each SUID case as well as the components of the case investigation. This was accomplished by building on existing state Child Death Review programs. Following a 2007 feasibility study, the CDC gathered input from partners to develop a program model for the SUID Case Registry. From 2009-2012, seven states (Colorado, Georgia, Michigan, Minnesota, New Hampshire, New Jersey and New Mexico) collected information on each SUID case in their state. These states have reviewed and entered information for more than 1,000 SUID cases. The National Center for the Review and Prevention of Child Death and the CDC worked together to provide training and technical assistance, including site visits with observations of SUID case team reviews. Standardized quality assurance activities have been implemented and all state teams are guided by an operations manual. The SUID Case Registry collects population-based SUID-specific case and investigation information from multiple sources. Together, the CDC SUID Case Registry and Child Death Review programs have catalyzed local and state actions across the spectrum of investigation, diagnosis, services and prevention.