Sudden Death in the Young (SDY) Data Coordinating Center
In Fall 2013, the National Institutes of Health, the Centers for Disease Control and Prevention, and the National Center began collaborating on a 5-year project to develop a surveillance registry of sudden deaths in youth, including deaths from unexpected cardiac causes. The registry portion of the project will be modeled after the SUID Case Registry and include a special case report module in the Case Reporting System on these types of deaths. The project also includes development of autopsy guidelines for SDY deaths and establishment of a biorepository at the University of Michigan where DNA specimens from children and youth who die unexpectedly, particularly from undiagnosed cardiac causes, can be banked to serve as a resource for NIH-funded researchers. The first year was a planning year, and state Child Death Review programs in several states were chosen to receive CDC funding to pilot the SDY module.