Supporting Fatality Review Programs Nationally

The Center for National Prevention Initiatives (CNPI) is comprised of the National Center for Fatality Review and Prevention (National Center) and the Data Coordinating Center (DCC).

The National Center provides technical assistance to pediatric and adult fatality review programs throughout the United States. Technical assistance is provided in the form of program site visits, written guidance reports, webinars, and data use agreements. The goal of the National Center is to catalyze prevention efforts. Two data systems- the Pediatric National Fatality Review-Case Reporting System and the Adult National Fatality Review-Case Reporting System- are managed by the National Center. The National Center is supported by funding through a cooperative agreement from the Health Resources and Services Administration and by the Centers for Disease Control and Prevention.

The DCC is responsible for Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Case Registry. The Case Registry compiles information, including consented DNA samples, about young individuals who pass away unexpectedly. The DCC works alongside the Centers for Disease Control’s Division of Reproductive Health, and the National Heart Lung and Blood Institute and National Institute of Neurologic Disorder and Stroke at the National Institutes of Health.

Both the National Center and DCC serve multidisciplinary teams that review fatalities of infants, children, and young adults up to the age of 21. The National Center also supports adult suicide fatality reviews, with a focus on veterans, service members, and their families. Information is gathered to better understand the causes of these deaths and find ways to prevent them.

Project Highlights

Technical Assistance

The National Center offers technical assistance opportunities available via site visits, web-based and digital resources, email, and telephone. Technical assistance supports teams develop, implement, and sustain prevention-focused fatality review processes.

Data Quality Initiative

The National Center began a Data Quality Initiative (DQI) to improve the quality and consistency of the data entered into the Pediatric National Fatality Review-Case Reporting System (NFR-CRS) in an effort to improve usefulness of the data at the state and national level for identifying prevention strategies and monitoring the effectiveness of prevention measures that have been implemented. The CDR DQI began in 2015 and expanded to FIMR in 2020.

Pediatric NFR-CRS
The Pediatric NFR-CRS a web-based, standardized case report tool that allows local and state Child Death Review (CDR) and Fetal and Infant Mortality Review (FIMR) users to enter case data, summarize findings, review team recommendations, access and download data, and create standardized reports. A data use agreement must be completed to participate. When data from a series or cluster of case reviews are analyzed over time, significant risk factors or patterns in child injury and safety can be identified.
Pediatric NFR-CRS

The National Center was awarded a contract with the Veterans Administration to build an adult data collection system in 2024. The adult data collection system will be launched in early 2025. Like the Pediatric NFR-CRS, the Adult NFR-CRS will allow users to enter information.

Pediatric NFR-CRS

The DCC manages the SUID and SDY Case Registry, which supports fatality review programs in 32 sites across the United States. These programs monitor SUID and SDY trends and characteristics that may affect the risk of fatalities. This information includes infant sleep positions. Examples of prevention efforts include educating parents and caregivers about safe sleep for babies and training hospital staff on safe sleep recommendations. Additionally, 12 of these sites attempt consent with families to have DNA saved for family DNA banking and future genomic research to identify genetic causes of young sudden death. 

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