Sudden Death in the Young (SDY) Case Registry

Sudden Death in the Young (SDY), those under 20 years of age, is a tragic event with longstanding impact on families and communities. Although the causes of SDY are myriad, sudden unexpected infant death (SUID), sudden cardiac death and sudden unexpected death in epilepsy (SUDEP) are three examples that have inspired public health efforts at prevention. Yet fundamental gaps in knowledge about incidence, mechanisms, and risk factors for SDY limit the identification of effective prevention efforts. The SDY component of the Sudden Unexpected Infant Death (SUID) and SDY Case Registry is a collaboration between the National Institutes of Health (NHLBI and NINDS) and the Centers for Disease Control and Prevention (CDC). It was designed to address critical knowledge gaps in the epidemiology and causes of SDY and develop a resource for research that will enhance the evidence base to inform prevention efforts. The SDY component of the SUID and SDY Case Registry (the Registry) is a prospective, population-based surveillance program that can comprehensively identify and gather data and biospecimens on cases of SDY in a large geographic area in the United States. Data can be used to determine the incidence of SUID, sudden cardiac death in the young, SUDEP, and other causes of pediatric sudden death. Specific objectives include: 1) describing the incidence of SDY in a large population in the United States using population-based surveillance, 2) compiling data from SDY cases to create a resource of information and biospecimens for research, 3) encouraging standardized approaches to investigation, autopsy, and categorization of SDY cases, 4) developing partnerships between local, state, and federal stakeholders towards a common goal of understanding and preventing SDY, and 5) supporting families who have lost loved ones to SDY by providing resources on bereavement and medical evaluation of surviving family members.