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NIH and CDC launch registry for sudden death in the young
Date:10/23/2013

A registry of deaths in young people from conditions such as heart disease and epilepsy is being created to help researchers define the scope of the problem and set future research priorities. The National Institutes of Health and the Centers for Disease Control and Prevention are collaborating to create the Sudden Death in the Young Registry.

"The sudden death of a child is tragic and the impact on families and society is incalculable," said Jonathan Kaltman, M.D., chief of the Heart Development and Structural Diseases Branch within the Division of Cardiovascular Sciences at the NIH's National Heart, Lung, and Blood Institute (NHLBI). "This registry will collect comprehensive, population-based information on sudden unexpected death 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."

Cases of sudden cardiac death or sudden unexpected death in epilepsy (SUDEP) are not routinely or systematically reported, and no commonly agreed upon standards or definitions for reporting currently exist. Complete information has not been collected on the incidences, causes, and risk factors for sudden death in the young. The lack of evidence fuels disagreements about the best prevention approach. Sudden cardiac death, also called sudden cardiac arrest, happens when the heart suddenly and unexpectedly stops beating and blood stops flowing to the brain and other vital organs.

Researchers know that the risk for sudden death in the young increases if the person has a heart-related condition. Examples include hypertrophic cardiomyopathy (thick heart muscle), congenital abnormalities or disorders of the coronary arteries that supply the heart with blood, arrhythmogenic right ventricular cardiomyopathy (a heart muscle problem), long QT syndrome (a disorder of the heart's electrical activity), or other heart abnormalities. Additionally, individuals who have epilepsy may die suddenl
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Contact: NHLBI Communications Office
NHLBI_news@nhlbi.nih.gov
301-496-4236
NIH/National Heart, Lung and Blood Institute
Source:Eurekalert

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