Sudden Unexpected Infant Death Case Registry
BackgroundTo 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.
SUID Case Registry State Grantees, 2012
States— Arizona, Colorado, Connecticut, Lousiana, Michigan, Minnesota, New Jersey, New Mexico, New Hampshire, Wisconsin.
PurposeThe 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
- Reduce time delay between case review and data entry.
- Encourage consistent and thorough use of the standard infant death scene investigation form by coroners and death scene investigators.
- Develop specific tools to collect autopsy information from coroners and pathologists.
- Supplement death scene information with EMS reports.
- Improve Data Quality by implementing efforts to reduce missing or unknown information.
Case Registry Successes and ProgressThe 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.
Sudden Infant Death Syndrome (SIDS)
Defining the ProblemSudden Unexpected Infant Death (SUID): The death of an infant, less than 1 year of age that occurs suddenly and unexpectedly. After a case investigation, these deaths may be diagnosed as suffocation, asphyxia, entrapment, infection, ingestions, metabolic diseases, cardiac arrhythmias, trauma (accidental or non-accidental), or SIDS. In some cases where the evidence is not clear, or not enough information is available, the death is considered to be from an undetermined cause.
Sudden Infant Death Syndrome (SIDS): The sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and a review of the clinical history. SIDS is a type of SUID.
Safe to Sleep
CDC is collaborating with the National Institutes of Health in its new Safe to Sleep campaign, formerly known as the Back to Sleep Campaign. The Safe to Sleep Campaign has new outreach and education activities aimed at reducing infant death risk from SIDS and other sleep-related sudden unexpected infant deaths.
- Suffocation by soft bedding—such as a pillow or waterbed mattress.
- Overlay—another person overlaying or rolling on top of or against the infant.
- Wedging or entrapment—wedging between two objects such as a mattress and wall, bed frame, or furniture.
- Strangulation—such as when an infant’s head and neck become caught between crib railings.
Understanding the ProblemThere are about 4,200 sudden unexpected infant deaths per year in the United States—half are caused by SIDS.1 The most frequently reported causes are—
- SIDS—the leading cause of infant death from 1–12 months old.
- Cause is unknown or undetermined. A thorough investigation was not conducted or after the investigation the cause could not be determined or remained unknown.
- Sleep-related suffocation—the leading cause of infant injury death.
Improving Reporting of SIDS and Other Sleep-Related SUIDCDC is committed to monitoring and ultimately reducing SIDS and other sleep-related SUID. A better understanding of the circumstances and the cause of death can help reduce future deaths. Our efforts aim to standardize and improve data collected at infant death scenes and promote consistent classification and reporting of cause of death for SUID cases. We have updated the Sudden Unexplained Infant Death Investigation Reporting Form and conducted regional train-the-trainer academies that taught state teams how to conduct comprehensive infant death investigations. CDC is also working with the Navajo nation to improve infant death scene investigations.
In addition, CDC and our partners developed the SUID Case Registry. The purpose of the SUID Case Registry is to track information about SUID at the 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’s objectives are to—
- Create state-level surveillance systems that build upon Child Death Review activities.
- Categorize SUID using standard definitions.
- Monitor the rates of different types of SUID and describe demographic and environmental factors.
- Determine similarities and differences among SUID.
- Save lives using evidence-based interventions.
Reducing the RiskHealth care providers and researchers don’t know the exact causes of SIDS, but they do know certain things you can do to help reduce the risk of SIDS other sleep-related SUID, such as—
- Always place a baby on his or her back to sleep, for naps and at night, to reduce the risk of SIDS.
- Use a firm sleep surface, covered by a fitted sheet, to reduce the risk of SIDS and other sleep-related causes of infant death. See crib safety information from the Consumer Product Safety Commission for more information.
- Your baby should not sleep in an adult bed, on a couch, or on a chair alone, with you, or with anyone else.
- Keep soft objects, toys, and loose bedding out of your baby’s sleep area.
- To reduce the risk of SIDS, do not smoke during pregnancy, and do not smoke or allow smoking around your baby.
- Breastfeed your baby to reduce the risk of SIDS.
- Give your baby a dry pacifier that is not attached to a string for naps and at night to reduce the risk of SIDS.
- Do not let your baby get too hot during sleep.
Creating a Safe Sleep EnvironmentLearn more about safe sleep environment and reducing the risk of SIDS and other sleep-related infant deaths, by reading the NICHD publication What Does a Safe Sleep Environment Look Like? [PDF - 336KB] and visit their Safe to Sleep Public Education Campaign Web site.
In addition, CDC supports new recommendations issued by the American Academy of Pediatrics (AAP). These new recommendations aim to reduce the risk of infant death from SIDS as well as death from known sleep-related causes. See the AAP Web site for more information.
If you or someone you know has experienced the loss of a baby, the following organizations may offer support:
- CDC. CDC WONDER Web site. http://wonder.cdc.gov/. Accessed September 17, 2012.
- Mathews TJ, MacDorman MF. Infant mortality statistics from the 2008 period linked birth/infant death data set. National Vital Statistics Reports.; 2012; 60(5).