photo: Mike Sands Samden Lhatoo and GQ Zhang

Case Western Reserve researchers are heading an international study of a little-understood phenomenon known as sudden unexpected death in epilepsy, or SUDEP.

University researchers are sharing a $27.3 million grant from the National Institutes of Health to establish the Center for SUDEP Research with Baylor College of Medicine (the team's co-leader) and 12 other partners, including University College London, New York University and the University of California, Los Angeles.

Each year, SUDEP affects 1 percent of people with epilepsy, meaning an estimated 2,750 people die each year in the United States. Detailed information about the phenomenon is scant, but researchers believe SUDEP occurs with no warning—and may or may not be seizure-related.

Researchers plan to recruit 2,500 people with epilepsy and collect a variety of data, including measures of the heart, oxygen capacity and brain waves. During the grant's five-year span, some individuals are likely to die suddenly. Researchers will review the medical information they already collected, such as genetic data and medication history, to find clues regarding what triggered the participants' deaths.

"No one understands how or why SUDEP occurs, and since we cannot observe a living SUDEP patient, we hope our data shines a light on how the disease works," said Samden Lhatoo, MD, professor of neurology at Case Western Reserve School of Medicine, director of the Epilepsy Center at University Hospitals Case Medical Center and principal investigator of the grant.

GQ Zhang, PhD, a professor of computer science in the Case School of Engineering and division chief of medical informatics in the School of Medicine, built the software tools to capture the data and manages the central repository the international researchers will use to share data and ultimately create an index to inform epilepsy patients of their risk of SUDEP.

Participants in the SUDEP study also can agree to donate their brains after death for analysis. Case Western Reserve and its research partners already share tissues and detailed information from 130 brains of SUDEP victims.

"While SUDEP is rare," Lhatoo said, "it is a phenomenon that severely impacts patients and families."

—Daniel Robison

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