1.11 out of 1,000 children with epilepsy die suddenly each year, according to a Canadian study by CURE grantee Dr. Elizabeth Donner of the University of Toronto. (1) Dr. Donner’s estimates confirm 2017 results garnered from the Swedish National Death Registry that also found the annual rate of sudden death to be 1.11 per 1,000 children with epilepsy. (2)
Both of these recent studies are in contrast to previous estimates which showed that Sudden Death in Epilepsy (aka SUDEP) affects 1 in 4,500 children with epilepsy each year. (3)
Dr. Donner has spent much of her career identifying and studying cases of SUDEP to determine how often sudden death occurs in children with epilepsy and who is at risk. A recipient of CURE’s 2009 Sudden Unexpected Death in Epilepsy Award, Dr. Donner set out to create a Canadian pediatric SUDEP registry in collaboration with the Canadian Paediatric Surveillance Program, with the goal of obtaining data on every child with a sudden death and epilepsy.
Dr. Donner hopes that this increased understanding of how many children are affected by SUDEP will lead to the identification of risk factors. She aims to save lives by understanding which children with epilepsy are most at-risk, so that therapies can be developed to prevent sudden death.
Although there is currently no known ‘cure’ for SUDEP, the efforts of Dr. Donner and her team have increased understanding about this devastating consequence of epilepsy. Through the work of dedicated researchers like Dr. Donner, we may soon be able to not only identify those that are at risk for SUDEP but also offer ways to prevent SUDEP from occurring at all.
1 – Keller AE et al. Incidence of sudden unexpected death in epilepsy in children is similar to adults. Neurology 2018; 91(2):e107-e111.
2 – Sveinsson O et al. The incidence of SUDEP: A nationwide population-based cohort study. Neurology 2017; 89(2): 170-177.
3 – Harden C et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the guideline development, dissemination, and implementation subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology 2017; 88(17):1674-1680.