First Report from North American SUDEP Registry Presented


At the annual meeting of the American Epilepsy Society, data were, for the first time, reported from the North American SUDEP Registry (NASR), a retrospective repository of medical data from persons who died from sudden unexpected death in epilepsy (SUDEP). Overall demographic and seizure-related data were similar to that found in previous studies, suggesting NASR data are representative of the many diverse presentations of SUDEP. 

 The vast majority (91%) of deaths were unwitnessed, and in these instances, 59% had evidence of a terminal seizure such as an oral laceration or incontinence. 

 For the 250 identified patients who died from SUDEP, the median age at death was 26 (range 1-70 years), and twice as many men as women died from SUDEP. Most patients were Caucasian (75.2%) with Hispanics (9.8%) and African Americans (9.6%) being the next largest ethnicities. For the 151 patients in whom seizure classification was possible, focal to bilateral seizures were most common (44.4%) followed by seizures with primarily generalized onset (31%); no history of tonic-clonic seizures was present in 24.5%.

 Since June 2011, living first degree relatives of patients who died of SUDEP have voluntarily shared their deceased family member’s, their own, and sometimes other family members medical history. Data collected includes medical records, EEGs, MRIs, death investigation reports, and DNA and brain tissue samples when available. Telephone interviews with the deceased’s next of kin have also been conducted to obtain details about social and family history, treatment information (including adherence), and seizure semiology.

 For every patient in the registry with SUDEP, 2 neurologists confirmed the diagnosis of SUDEP and the patient’s seizure type after review of the patient’s medical records. If disagreement occurred, the classification was adjudicated by a panel of 3 to 5 epileptologists, SUDEP researchers, and medical examiners. Researchers at the NYU Langone Comprehensive Epilepsy Center where the registry was created aim to share NASR data openly with qualified researchers to further understand and hopefully eventually prevent SUDEP. 


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