Sudden Unexpected Infant Death Case Registry

Background

To provide more comprehensive data to characterize Sudden Unexpected Infant Death (SUID) cases and to determine which factors in the sleep environment contribute to SUID cases, the Centers for Disease Control and Prevention (CDC), along with many public and private partners developed the SUID Case Registry pilot program. In August 2009, CDC awarded funding to five states—Colorado, Georgia, Michigan, New Jersey, and New Mexico to participate in the SUID Case Registry Pilot Program.  These grantees began data collection January 1, 2010.  In July 2010, CDC granted funding to Minnesota and New Hampshire. They began data collection January 1, 2011.

Purpose

The Sudden Unexpected Infant Death Case Registry (SUID-CR) Pilot Program is a state-based surveillance system that supplements current vital statistics-based surveillance methods. The SUID-CR builds upon the National Center for Child Death Review (NCCDR) system funded by HRSA MCHB. The NCCDR system uses multidisciplinary child death review teams to review the circumstances of childhood deaths and uses findings to inform prevention strategies. Child death review teams, while functioning in all states but Idaho, have limited resources to review every SUID case within a state. Resources from the cooperative agreement promote collaborative partnerships between state health departments (especially vital statistics offices) and child death review teams, allowing for population-based state surveillance of SUID. The SUID-CR relies on multidisciplinary team review of several data sources including reports from death scene investigation, pathology, and medical records. This population-based SUID surveillance is critical to researchers, medicolegal investigators, and program planners who use this data to improve knowledge about SUID characteristics and risk factors, evaluate case investigation practices, and identify high risk groups to target interventions.

Grantee responsibilities include—

• Develop an efficient and timely method for case identification for all SUID deaths in the state. Grantees strive to identify and review cases within 3 months.
• Access the following required data sources for each case: death certificates, medical examiner or coroner records (e.g., Sudden Unexplained Infant Death Investigation Reporting Form or autopsy reports), and law enforcement records. Ideally grantees also have access to infant medical records since birth (including newborn screening results), birth certificates, mother’s obstetric records and any social service records that pertain to the case.
• Follow the CDC SUID-CR and NCCDR manual of procedures and protocols.
• Enter data into the NCCDR Web-based Case Reporting System.
• Implement a quality assurance plan to improve data quality and reduce missing data.
• Communicate progress to CDC via quarterly reports, conference calls, and an annual reverse site visit.

CDC in collaboration with the National Center for Child Death Review (NCCDR)

• Provides case definition, variable definitions, and a data dictionary.
• Conducts training in data standards and coding, data entry, data editing, and other quality assurance functions, record tracking, and transmission of data to CDC for quality assurance and analysis purposes.
• Maintains the NCCDR Case Reporting System.
• Reviews submitted data for quality and completeness, and provides feedback accordingly. Works with grantees to systematically resolve problems of missing or inaccurate data.
• Conducts site visits and offers technical assistance to solve problems related to data collection, case review, data entry, quality assurance, and evaluation.

Quality Improvement Goals

1. Reduce time delay between case review and data entry.
2. Encourage consistent and thorough use of the standard infant death scene investigation form by coroners and death scene investigators.
3. Develop specific tools to collect autopsy information from coroners and pathologists.
4. Supplement death scene information with EMS reports.
5. Improve Data Quality by implementing efforts to reduce missing or unknown information.

Case Registry Successes and Progress

The CDC SUID-CR pilot program set out to enhance state-based SUID information collection systems that can comprehensively describe the circumstances and events surrounding SUID cases. Tracking the number of cases identified and reviewed for each state has shown that grantees are meeting or exceeding the number of cases expected. Grantees also track cases as they go through review, data entry, and quality assurance. After the first six months of the program, it became apparent that this time line was slowing down at data entry. Grantees had focused efforts on identifying and reviewing cases within 90 days and now they are working to address the time lag in data entry, mostly at the local team level.

With only 9 months of data collection completed, there has already been evidence that the child death review process in SUID-CR pilot program states have enhanced their capacity to bring infant death investigation and autopsy information to the case review. Review teams are concentrating efforts to examine not only what was discovered during these investigations, but how these investigations were accomplished. This represents a shift in how these teams function and offers an opportunity to improve infant death investigation at the jurisdictional level.

By providing additional resources, the SUID-CR pilot program has improved data quality of all child death review cases, not merely SUID cases. This would not be accomplished without improved communication with the medicolegal professionals involved in infant and child death investigation. Reports from grantees also suggest that the SUID-CR pilot program has served to reinvigorate review teams with a sense of purpose and the program has brought new members to review teams. Finally, the SUID-CR pilot program also has created opportunities for state child death review staff to present local and state data to new audiences, including national conferences.

For more information view the child death review process.