CDC’s Sudden Unexpected Infant Death Initiative
Since 1998, it appears that medical examiners and coroners are moving away from classifying deaths as SIDS and calling more deaths accidental suffocation or unknown cause, suggesting that diagnostic and reporting practices have changed. Inconsistent practices in investigation and cause-of-death determination hamper the ability to monitor national trends, ascertain risk factors, and design and evaluate programs to prevent these deaths.
As a response, CDC's Division of Reproductive Health’s (DRH) began the Sudden Unexpected Infant Death (SUID) Initiative. CDC and its partners began activities aimed at improving the investigation and reporting practices of Sudden Infant Death Syndrome (SIDS) and other SUID.
The CDC’s research on SUID and SIDS focuses on efforts to standardize and improve data collected at infant death scenes and to promote consistent classification and reporting of cause and manner of death for SUID cases. By improving national reporting of SUID, we aim to prevent SUIDs by using improved data to monitor trends and identify those at risk.
SUID Initiative Goals and Activities
The goals of the SUID Initiative are to—
- Standardize and improve data collected at death scene.
- Promote consistent classification and reporting of cause of death.
- Improve national reporting of SUID.
- Reduce SUID by using improved data to identify those at risk.
To accomplish these objectives, the CDC SUID Initiative collaborated with a number of organizations to—
- Revise the 1996 Sudden Unexplained Infant Death Investigation Reporting Form (SUIDIRF).
- Develop a training curriculum and materials for investigators of infant deaths.
- Train medicolegal professionals and child advocates to conduct comprehensive infant death investigations.
- Develop and implement a state-based SUID Case Registry.
Sudden Unexplained Infant Death Investigation Reporting Form
In 2003, CDC led activities aimed at revising the 1996 Sudden Unexplained Infant Death Investigation Reporting Form and Guidelines for the scene investigation, as well as actively educating and disseminating training materials on infant death scene investigations.
In March 2006, a revised reporting form known as the SUIDIRF was released. Along with the revised SUIDIRF, the CDC and partners developed training materials and conducted train-the-trainer regional academies for medical examiners, coroners, investigators, and child advocates across the United States.
When the CDC published the 1996 SUIDIRF, an evaluation suggested that more medicolegal professionals were likely to use the form if there were training to accompany the form (Hauck, 2001).
The SUID Initiative and collaborative partners created the following training materials:
These training materials were used in conducting the five regional Sudden Unexplained Infant Death Investigation Training Academies.
As a means of disseminating Sudden Unexplained Infant Death Investigation training curriculum and materials, CDC conducted train-the-trainer academies in five U.S. regions from 2006 to 2008. These regional, multidisciplinary academies provided training for every state, as well as American Indian/Alaska Native teams. The academies produced more than 250 trainers, including medical examiners, coroners, law enforcement officers, child advocates, college faculty members, and medicolegal death scene investigators. Individuals participating in these academies were expected to conduct additional trainings at conferences, meetings, and courses in their respective states.
Topics covered at the training academy included how to—
- Complete the SUIDIRF.
- Interview families.
- Conduct death scene investigations including doll reenactments.
- Assess infant growth and development.
The SUIDIRF and training curriculum have been endorsed by several national organizations representing law enforcement, medical examiners, and coroners. More than 20,000 individuals have been trained, and many jurisdictions report that they are using the new SUIDIRF. View map SUIDI Training Academies.
SUID Surveillance System Feasibility Study
In 2007, CDC conducted a SUID surveillance feasibility study with seven states in collaboration with CDC’s National Violent Death Reporting System (NVDRS). NVDRS is a state-based surveillance system that links data from law enforcement, coroners and medical examiners, and vital statistics, etc. The feasibility study indicated that the most efficient way to develop a surveillance system would be to use the Child Death Review (CDR) system already in place. CDC partners suggested calling a future surveillance system the SUID Case Registry.
SUID Case Registry
Planning and Development
In 2008, partners with an interest in SIDS and SUID came together to discuss the logistics of the SUID Case Registry and Surveillance System. Partners supported the idea of building upon and enhance the CDR system, as it would strengthen multidisciplinary team reviews already in place and avoid duplication of efforts. Discussion also focused around creating a program model, delineating objectives, and questions that a SUID Case Registry could answer, and defining a limited set of variables.
The SUID Case Registry aims to generate public health surveillance information about SUID at the national, state, and local levels that is more detailed than what is currently available. Instead of creating an entirely new system, the SUID Case Registry enhances the National Center for Child Death Review program and their Case Reporting System.
The SUID Case Registry generates public health surveillance information that can comprehensively describe the circumstances and events surrounding SUID cases. This will allow researchers, medicolegal investigators, and program prevention planners to better understand characteristics associated with SUID, evaluate case investigation practices, and ultimately prevent infant deaths.
The SUID Case Registry’s objectives are to—
- Create state-level surveillance systems that build upon Child Death Review activities.
- Categorize SUID using standard definitions.
- Monitor the incidence of different types of SUID and describe demographic and environmental factors.
- Determine similarities and differences among SUID unexplained by autopsy.
- Inform interventions and potentially save lives.
In July 2009, five state participants were announced to receive funding for the SUID Case Registry Pilot Study as part of a cooperative agreement. Colorado, Georgia, Michigan, New Jersey, and New Mexico began entering information about SUID cases in January 2010. They use a modified version of the National Center for Child Death Review’s Web-based data collection system already place specific to SUID. An additional two states (New Hampshire and Minnesota) were added to the SUID Case Registry in July 2010.
Hauck F. Final Report: National Survey to Evaluate Use of the Sudden Unexplained Infant Death Investigation Report Form (SUIDI RF). Charlottesville, VA: University of Virginia Health System; 2001 (unpublished).