SUID and SDY Case Registry
As part of the Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Case Registry, CDC’s Division of Reproductive Health supports SUID monitoring programs in 22 states and jurisdictions, covering about 1 in 3 SUID cases in the United States. The SUID and SDY Case Registry builds on child death review programs and uses the National Center for Fatality Review and Prevention’s Case Reporting System, bringing together information about the circumstances associated with SUID and SDY cases, as well as information about investigations into these deaths. Participating states and jurisdictions use data about SUID and SDY trends and circumstances to develop strategies to reduce future deaths.
CDC and the National Institutes of Health collaborate on the SDY component of the SUID and SDY Case Registry, which expands the population of the previously established SUID Case Registry to include children and adolescents. The SDY component of the Case Registry was created to increase the understanding of the prevalence, causes, and risk factors for infants, children, and young adults who die suddenly and unexpectedly and to inform strategies to prevent future deaths.
Participating states and jurisdictions conduct the following activities:
- Monitor SUID trends and characteristics that may affect the risk of SUID, such as infant sleep position. Monitoring SUID rates is vital to identifying new risk factors and tracking progress toward reducing SUID.
- Improve the quality and consistency of SUID investigation data. This activity helps standardize the process of determining cause of death. As a result, states are able to more accurately monitor SUID rates and develop informed prevention activities.
- Use data about SUID trends and characteristics to carry out actions to reduce future deaths. Examples of these activities include:
- Educating parents and caregivers about safe sleep for babies.
- Training hospital staff on safe sleep recommendations.
- Supporting policy changes that require childcare centers to apply safe sleep recommendations.
Participating states and jurisdictions include Alaska; Arizona; Colorado; Cook County, Illinois; Kentucky, Louisiana, Maryland, Michigan, New Jersey, select counties in Pennsylvania; Tennessee; Pierce County, Washington; and Wisconsin.
SUID and SDY
Participating states and jurisdictions include San Francisco County, California; Delaware; Indiana; select counties in Michigan; Minnesota; Nevada; New Hampshire; New Mexico; Philadelphia County, Pennsylvania; select counties in Tennessee, Tidewater Region, Virginia; Utah; and select counties in Wisconsin.
CDC recently announced the availability of funds to support organizations in coordinating a state, jurisdictional or multi-jurisdictional SUID and SDY Case Registry. Funded organizations will identify all resident sudden and unexpected infant (Component A) or infant/child (Component B) deaths, review cases through their Child Death Review process, compile and enter case information into the National Fatality Review Case Reporting System, and analyze data to calculate incidence rates, identify disparities between subpopulations, and inform prevention activities, including reducing disparities. In addition, funds are available to develop SUID prevention strategies informed by data and American Academy of Pediatrics guidance (Component C).
- AlaskaSuccess: After taking steps to improve cultural diversity in infant mortality reviews, the Alaska Maternal Child Death Review Program observed increased depth of discussion during reviews and more specific prevention recommendations.
- ColoradoSuccess: Colorado linked immunization and SUID data, allowing for more informed health promotion activities.
- KentuckySuccess: After a partnership with a home visiting program, almost 9 in 10 caregivers reported always placing their baby in a safe sleep area.
- TennesseeSuccess: After collaborating with programs to reach families in their homes, sleep-related infant deaths declined in Tennessee.