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SUID Case Registry

About the Registry

The purpose of the sudden unexpected infant death (SUID) Case Registry is to conduct and improve population-based SUID surveillance in grantee states and to categorize SUID cases using standard definitions. Instead of creating an entirely new system, the SUID Case Registry builds upon the National Center for the Review and Prevention of Child Deaths (NCRPCD) program and their Case Reporting System, funded by Health Resources and Services Administration, Maternal and Child Health Bureau. The NCRPCD system works with existing multidisciplinary child death review programs at the local and state levels. Child death review teams meet regularly and share various data sources to discuss the circumstances and events surrounding SUID cases. Review findings help guide prevention strategies. Following review, many states enter findings into the NCRPCD Case Reporting System. CDC provides technical assistance and resources to improve grantee case ascertainment, data completeness and timeliness of data specific to SUID cases.

The SUID Case Registry is a resource for understanding unexpected infant deaths. The registry provides comprehensive information about the circumstances associated with these infant deaths, as well as information about case investigations and their components.

CDC and state grantees use the SUID Case Registry surveillance data for monitoring SUID trends, program planning and evaluation, modifying public health practice and policy for state maternal and child health programs, and encouraging more consistent medicolegal practices. Most importantly, the SUID Case Registry grantees monitor risk factors associated with these infant deaths, which allows for development of targeted prevention and intervention strategies and systems improvements.

Sudden Death in the Young Registry

Sudden Death in the Young Registry

CDC and the National Institutes of Health are working together to create the Sudden Death in the Young Registry to get better information on sudden unexpected deaths among young people up to age 19 in the United States .

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.
  • Describe demographic and environmental factors associated with the different types of SUID.
  • Guide interventions and potentially save lives.
  • Improve systems of care for families.

SUID Case Registry State Grantees, 2012-2015

Map of SUID Case Registry State Grantees, 2012. States highlighted are listed below.

Current State Grantees: Arizona, Colorado, Louisiana, Michigan, Minnesota, New Jersey, New Mexico, New Hampshire, Wisconsin. Six states (CO, MI, MN, NH, NJ, and NM) also participated in the 2009-2012 program. Three new states (AZ, LA, WI) began data collection 1/1/2013.

During this program cycle, state grantees use information from their SUID Case Registry to identify gaps in infant death investigations. Information from the SUID Case Registry is also used to recognize opportunities for interventions related to safe sleep and improving systems of care for families, including infant death investigations.

Improving Infant Death Investigations: A Case Study from New Mexico

New Mexico used its SUID Case Registry data to examine the components of infant death investigations. The data identified scene re-creations with doll re-enactment as an area for improvement. Based on the findings, The New Mexico Department of Health together with the Office of the Medical Investigator, is training investigators to use dolls. New Mexico is also creating and garnering support for an institutional policy to use dolls to re-create the scene at every infant death investigation.

Targeting Safe Sleep Messages: A Case Study from New Jersey

New Jersey used its SUID Case Registry data to identify high-risk populations that might benefit from targeted interventions. The data showed that teen mothers were overrepresented in New Jersey SUID, and that almost every mother received prenatal care. Based on these findings, New Jersey Department of Children and Families partnered with the New Jersey Department of Education and Department of Health and sponsored a Safe Sleep art contest in middle schools throughout New Jersey. Middle school students are current babysitters and future parents. The winning submission was printed on a tote bag which was filled with safe sleep materials. The bags were distributed to 20 federally qualified health centers (that offer prenatal care to low-income women), 17 Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) Offices, 22 Aid to Families with Dependent Children Offices, and multiple home visiting programs.

SUID Case Registry Program Accomplishments, 2009-2012

  • Case ascertainment. Met the number of cases expected in each state.
  • Data completeness. Improved data completeness and timeliness of data entry and quality assurance efforts by providing targeted technical assistance to state grantees.
  • Communication and collaboration with medicolegal professionals. Improved communication with the medicolegal professionals involved in infant and child death investigation which helped meet objectives.
  • Energized team reviews. Reinvigorated review teams with a sense of purpose and brought new members to review teams.
  • Disseminated findings. Created opportunities for state grantee staff responsible for child death reviews to present local and state data to new audiences, including national conferences such as
    • American Public Health Association Annual Meeting.
    • Association of Maternal Child Health Programs Annual Conference.
    • Maternal-Child Health Epidemiology Meeting.
    • International Conference on Stillbirth, SIDS and Infant Survival.

 

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