U.S. to Create New Young Death Registry

    October 24, 2013

The death of a child is rarely expected and sometimes hard to explain. Health professionals in the U.S. are now trying to determine just how widespread the impact of such deaths are in the country – and what can be done about it.

The U.S. National Institutes of Health (NIH) today announced that it is partnering with the U.S. Centers for Disease Control and Prevention (CDC) to create a registry of all child deaths in the U.S. The system, called the Sudden Death in the Young Registry, will be an extension of the CDC’s Sudden Unexpected Infant Death Case Registry. It will track the deaths of infants, children, teens, and young adults, compiling as much data on each case as possible.

“The sudden death of a child is tragic and the impact on families and society is incalculable,” said Dr. Jonathan Kaltman, chief of the Heart Development and Structural Diseases division 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.”

The new registry will be, in addition to other causes, collect data on sudden cardiac death and sudden unexpected death in epilepsy in the young. According to the NIH, data on these deaths are not reported on , and collecting them will help doctors determine the risk factors and causes of such deaths. It could also help formulate preventative strategies to prevent deaths in the future.

Data on the child deaths will be reviewed by teams in each of the states participating in the registry, and then compiled by a panel of medical experts for standardization. The standardized data will be stored in a centralized database managed by the Michigan Public Health Institute, and collected blood samples will be stored in a centralized biorepository.