The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality

Abstract

Knowledge gaps persist about the incidence of and risk factors for sudden death in the young (SDY). The SDY Case Registry is a collaborative effort between the National Institutes of Health, the Centers for Disease Control and Prevention, and the Michigan Public Health Institute. Its goals are to: (1) describe the incidence of SDY in the United States by using population-based surveillance; (2) compile data from SDY cases to create a resource of information and DNA samples for research; (3) encourage standardized approaches to investigation, autopsy, and categorization of SDY cases; (4) develop partnerships between local, state, and federal stakeholders toward a common goal of understanding and preventing SDY; and (5) support families who have lost loved ones to SDY by providing resources on bereavement and medical evaluation of surviving family members. Built on existing Child Death Review programs and as an expansion of the Sudden Unexpected Infant Death Case Registry, the SDY Case Registry achieves its goals by identifying SDY cases, providing guidance to medical examiners/coroners in conducting comprehensive autopsies, evaluating cases through child death review and an advanced review by clinical specialists, and classifying cases according to a standardized algorithm. The SDY Case Registry also includes a process to obtain informed consent from next-of-kin to save DNA for research, banking, and, in some cases, diagnostic genetic testing. The SDY Case Registry will provide valuable incidence data and will enhance understanding of the characteristics of SDY cases to inform the development of targeted prevention efforts.

FIGURE 1

SDY Case Registry organizational structure. The CDC oversees the surveillance activities of the states/jurisdictions. Information is managed by the Data Coordinating Center at MPHI, and DNA samples are processed and stored at the University of Michigan Biorepository. After consent is obtained, data and DNA samples are available for NIH-approved research studies.

FIGURE 2

Case flow. This figure demonstrates the steps involved in identifying and describing a case for inclusion in the SDY Case Registry.

FIGURE 3

This map depicts the states/jurisdictions participating in surveillance for the SDY Case Registry: Delaware, Georgia, Minnesota, Nevada, New Hampshire, New Jersey, and Tennessee, as well as the city of San Francisco, the Tidewater region of Virginia, and 10 counties in Wisconsin.