National Registry to Aid Sudden Unexpected Death in Epilepsy Research

National Registry to Aid Sudden Unexpected Death in Epilepsy Research
National Registry to Aid Sudden Unexpected Death in Epilepsy Research
The Sudden Death in the Young Registry will help researchers better understand the causes of and set research priorities for sudden unexpected death in epilepsy (SUDEP), heart disease.

Cases of sudden unexpected death in epilepsy (SUDEP) are not currently routinely or systematically reported in the United States making it difficult to elucidate risk factors for the condition. But this is about to change, according to the National Institutes of Health and the CDC. 

The two agencies are collaborating to create the Sudden Death in the Young Registry. The registry will use comprehensive data on each recorded case of sudden death in infants, children, and individuals aged up to 24 years related to epilepsy and heart disease in 10 states and major metropolitan areas to estimate national incidence rates, the agencies announced in joint press release.

The 10 grantees will begin reviewing cases January 2015, and will enter findings from death scene investigations, medical records, autopsy reports, and other pertinent data sources for each case into a database managed by the Michigan Public Health Institute. DNA samples from the cases will be stored at a centralized bio-repository.

SDY and SUID Registries

Regions participating in Sudden Death in the Young Registry and Sudden Unexpected Infant Death Registry. Image courtesy of CDC.

“[This] is a critical first step toward figuring out how to best prevent these tragedies,” said Jonathan Kaltman, MD,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).

The public health agencies chosen to participate in the registry include Delaware, Georgia, Michigan, Minnesota, New Hampshire, New Jersey, the city of San Francisco, the Tidewater region of Virginia, Tennessee, and Wisconsin. 

The National Institute for Neurological Disorders and Stroke (NINDS) will review data on SUDEP, whereas NHLBI will analyze data related to sudden cardiac death. The resulting registry will become a resource for scientists to learn more about the causes of sudden death in the young and ultimately to develop better diagnostic and prevention approaches, according to the NIH and CDC.

The program is an expansion of the CDC’s Sudden Unexpected Infant Death Case Registry, which currently tracks sudden unexpected deaths in children up to age 1 in nine states.