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The SDY case registry has an organizational structure that reflects the way in which the CDC and states/jurisdictions work together. The SDY Registry consists of an administrative component, the Data Coordinating Center, and the University of Michigan Biorepository, which stores DNA samples. After consent is obtained, data and DNA are available for NIH-approved research studies. The CDC oversees the surveillance activities of the state/jurisdictions and works with them to ensure that information is shared.
SDY – Surveillance for Sudden Death in Youth is an organization founded by parents to promote public awareness of sudden unexplained death in children under the age of 25 years. The organization has established a network of state-based Sudden Unexpected Death (SUD) Registries, which collect data and performs forensic testing for SUD in youth. The SUD Registries are a valuable resource for families and the healthcare community. The SUD Registries also serve as a valuable source of data for researchers studying the causes of sudden death in young people.
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