WHAT: The NIH and CDC announce awards to ten grantees for the Sudden Death in the Young Registry. Six are current or former grantees from the Sudden Unexpected Infant Death (SUID) Registry: Georgia, Michigan, Minnesota, New Hampshire, New Jersey, and Wisconsin. Four are new grantees: Delaware, Tennessee, the city of San Francisco and the Tidewater region of Virginia.
Grants were awarded on September 30, 2014. After a period of training and preparation, the grantees will begin reviewing cases in January 2015. After obtaining consent, information gathered through Child Death Review and advanced clinical review will be entered into a database managed by the Michigan Public Health Institute and DNA samples will be stored at a biorepository.
A registry of deaths in young people from conditions such as heart disease and epilepsy will help investigators define the scope of the problem and understand the characteristics of youths who die suddenly. The program will estimate the incidence of sudden death in infants, children, and young adults up to age 24 (depending on state mandate) by analyzing comprehensive data on each case.
The NIH's National Heart, Lung, and Blood Institute (NHLBI) will analyze data related to sudden cardiac death while the National Institute for Neurological Disorders and Stroke (NINDS) and CDC’s Epilepsy experts will analyze data on SUDEP.
The Sudden Death in the Young Registry is jointly funded by the NHLBI, the NINDS, and the CDC.
WHO: Kristin M. Burns, MD, Medical Officer for the Heart Development and Structural Diseases Branch/Division of Cardiovascular Sciences at the NHLBI.
Press Release: NIH and CDC launch registry for sudden death in the young (October 23, 2013): http://www.nhlbi.nih.gov/news/press-releases/2013/nih-and-cdc-launch-registry-for-sudden-death-in-the-young