Announcement: Sudden Death in the Young Case Registry
Weekly / April 1, 2016 / 65(12);330
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Approximately 3,500 infants die suddenly and unexpectedly each year in the United States (1). Less is known about the incidence in children because epidemiologic studies of these deaths in children are rare (2). The increased mortality risk in children with undetected heart conditions or epilepsy highlights the need for expanded surveillance to identify sudden unexpected death associated with these conditions (3,4).
In 2013, with support from the National Institutes of Health, CDC expanded its Sudden Unexpected Infant Death* Case Registry to develop the Sudden Death in the Young Case Registry (SDY-CR). The first registry helps states compile information on infant deaths that remain unexplained after investigation, whereas SDY-CR is an active surveillance system that targets both sudden cardiac deaths (SCD) and sudden unexpected deaths in epilepsy (SUDEP) among children and young adults. SDY-CR’s goals are to 1) determine the incidence of SCD and SUDEP among infants, children, and adults aged ≤19 years, 2) collect clinical and demographic information about cases, 3) collect and store DNA samples in a biorepository for research, 3) examine preventable risk factors contributing to sudden unexpected death, and 4) inform prevention efforts.
Participating states and jurisdictions identify SDY-CR cases using existing child death review systems and protocols (5). SDY-CR also includes an advanced review team (e.g., cardiologists, neurologists, and forensic pathologists) who assist in categorizing sudden unexpected deaths in the young, using a standardized protocol. The National Institutes of Health will fund scientists who access SDY-CR data and samples to conduct research examining risk factors associated with SCD and SUDEP.
In 2016, seven states (Delaware, Georgia, Minnesota, New Hampshire, New Jersey, Nevada, and Tennessee) and three other jurisdictions (San Francisco; Tidewater, Virginia; and selected counties in Wisconsin) are participating in SDY-CR. Additional information about SDY-CR is available at http://www.nhlbi.nih.gov/news/spotlight/fact-sheet/frequently-asked-questions-about-sudden-death-young-case-registry.
- CDC. Sudden unexpected infant death and sudden infant death syndrome. Atlanta, GA: US Department of Health and Human Services, CDC; 2016. http://www.cdc.gov/sids/data.htm
- Chugh SS, Reinier K, Balaji S, et al. Population-based analysis of sudden death in children: The Oregon Sudden Unexpected Death Study. Heart Rhythm 2009;6:1618–22. CrossRef PubMed
- Selassie AW, Wilson DA, Malek AM, et al. . Premature deaths among children with epilepsy—South Carolina, 2000-2011. MMWR Morb Mortal Wkly Rep 2014;63:989–94. PubMed
- Wong LC, Behr ER. Sudden unexplained death in infants and children: the role of undiagnosed inherited cardiac conditions. Europace 2014;16:1706–13. CrossRef PubMed
- Covington TM. The US National Child Death review case reporting system. Inj Prev 2011;17(Suppl 1):i34–7. CrossRef PubMed
* The death of an infant aged <1 year that occurs suddenly and unexpectedly, and whose cause of death is not immediately obvious before investigation.
Suggested citation for this article: Announcement. Sudden Death in the Young Case Registry. MMWR Morb Mortal Wkly Rep 2016;65:330. DOI: http://dx.doi.org/10.15585/mmwr.mm6512a6.
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