Registry to collect data on youths’ heart-related deaths

The National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) are building a registry to track sudden deaths in young people with heart-related conditions and epilepsy.

The registry will collect population-based data on sudden unexpected death in people up to age 24 in the U.S. It will allow researchers to estimate incidence and research needs for conditions such as hypertrophic cardiomyopathy, congenital abnormalities or disorders of the coronary arteries, arrhythmogenic right ventricular cardiomyopathy, long QT syndrome and other heart abnormalities.

“The sudden death of a child is tragic and the impact on families and society is incalculable,” Jonathan Kaltman, MD, chief of the Heart Development and Structural Diseases Branch in NIH's National Heart, Lung, and Blood Institute (NHLBI), said in a release. “It is a critical first step toward figuring out how to best prevent these tragedies.”

The registry, called the Sudden Death in the Young Registry, is an expansion of the CDC's Sudden Unexpected Infant Death Case Registry, which tracks sudden unexpected deaths in children up to age 1 in nine states. The new registry will include as many as 15 states or major metropolitan areas.

State public health agencies will be able to apply to the CDC to participate in the registry in 2014. De-identified data will be entered into a centralized database managed by a data coordinating center at the Michigan Public Health Institute. Blood samples from a subset of cases will be sent to a centralized biorepository.

The NIH's NHLBI will analyze data related to sudden cardiac death while the National Institute for Neurological Disorders and Stroke (NINDS) will also participate in the registry. The registry is jointly funded by NHLBI, NINDS and the CDC.