The risk of death for people with epilepsy is typically 2-3 times that of the average population. Although death can occur for many different reasons, some deaths are attributed to Sudden Unexpected Death in Epilepsy (SUDEP).

SUDEP is the death of an otherwise healthy individual with epilepsy that occurs either immediately after a seizure or even when there is no recent evidence of seizure activity. Risk factors for SUDEP include having epilepsy for a long period of time, having drug-resistant generalized tonic-clonic seizures, and having seizures at night.

Based on population studies, SUDEP is responsible for 1 death per 1000 patients per year but can be up to 9.3 per 1000 in patients with drug-resistant epilepsy. It is believed that SUDEP occurs less frequently in children (0.43 per 1000) but more studies need to be done.

Dr. Elizabeth Donner has initiated a registry for SUDEP deaths in Canadian children. Also, in collaboration with the Ontario Forensic Pathology Service, Dr. Donner and colleagues are examining epilepsy-related deaths across the province. These studies on SUDEP in children need to be done to help us understand which children are at risk and identify potential ways to prevent SUDEP deaths in these children.

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