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NIH, CDC launch registry for sudden death in youth
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The NIH and the CDC have announced the launch of the Sudden Death in the Young Registry, which will collect information on US children and young adults up to age 24 years who die of sudden cardiac death or sudden unexpected death in epilepsy.
The information amassed in the registry will help researchers define the scope of sudden death in young people and set future priorities for research.
“This registry will collect comprehensive, population-based information on sudden unexpected deaths in youths up to age 24 in the United States. It is a critical first step toward figuring out how to best prevent these tragedies,”Jonathan Kaltman, MD, chief of the heart development and structural diseases branch of the NHLBI, said in a press release.
It is established that the risk for sudden cardiac death in youth increases if a person has hypertrophic cardiomyopathy, congenital abnormalities or disorders of coronary arteries, arrhythmogenic right ventricular cardiomyopathy, long QT syndrome, or other CV defects. However, complete information on incidences, causes and risk factors has not been collected.
The registry will serve as an expansion of the CDC’s nine-state Sudden Unexpected Infant Death Case Registry, which tracks sudden unexpected deaths in children up to age 1 year. State public health agencies will be able to apply to the CDC for participation in the new registry in 2014. As many as 15 states will be included, according to the press release.
Child death review teams in participating states will examine findings from death scene investigations and review medical records, autopsy reports and other data sources. The data will be entered into a centralized database, and blood samples will be sent to a central biorepository after parental consent. The idea is for the data and samples to become a resource for researchers, according to the release.