Risk factors for sudden unexplained death in epilepsy (SUDEP)

Brief description of study

The purpose of this multi-site study is to build a research registry – the “North American SUDEP Registry (NASR)” to assess the risk factors and pathophysiologic mechanisms leading to sudden, unexpected death in epilepsy patients (SUDEP). The registry will collect bio-specimens, and medical, lifestyle and where applicable, death information from three cohorts; 1) decedents with or without a history of seizures; 2) living controls with a diagnosis of epilepsy; and 3) immediate family members of a decedent enrolled in NASR who died from SUDEP. The data collected will then be analyzed to investigate the clinical, genetic, and physiological mechanisms and risk factors for SUDEP.


Clinical Study Identifier: 11-01664
Principal Investigator: Orrin Devinsky.


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