NIH and CDC launch registry of death in the young

The National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have joined forces to create a new registry of sudden deaths in young people. The hope is that the resulting database will provide researchers and health care practitioners with valuable information regarding the scope of the problem and ideas about how to prevent future tragedies.

According to the National Heart, Lung, and Blood Institute (NHLBI), the registry, called the Sudden Death in the Young Registry, will track unexpected deaths of children, adolescents, and young adults up to age 24 years from such conditions as heart disease and epilepsy.

Currently, physicians are not required to report cases of sudden death in children. Without a formal system for collecting information, researchers have had a difficult time determining the exact incidence, causes, and risk factors for sudden death in the young, as well as the best approaches for prevention.

Experts know that the risk for sudden cardiac arrest (SCA) is higher among young people with heart-related conditions, such as hypertrophic cardiomyopathy, congenital abnormalities or disorders of the coronary arteries supplying the heart, arrhythmogenic right ventricular cardiomyopathy, and long QT syndrome. What they don’t know, for example, is why young people with epilepsy sometimes die suddenly and expectedly (SUDEP) without a structural or drug-related cause of death found at autopsy.

The new registry is an expansion of the CDC’s Sudden Unexpected Infant Death Case Registry, which tracks sudden deaths in children aged up to 1 year in 9 states. States may begin applying to the CDC to participate in the new registry in 2014. The registry hopes to track unexpected deaths in children and adolescents in 15 states or major metropolitan areas.

The NHLBI will analyze data relating to SCA, while the National Institute for Neurological Disorders and Stroke will review cases of SUDEP.

According to the Sudden Cardiac Arrest Foundation, estimates of the annual incidence of SCA among young people do, in fact, vary widely. In 2012, the American Heart Association reported 10,235 cases of SCA annually in youth, while others believe the incidence is less than 1,000 children annually.

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