Priority 4 from the Epilepsy (Canada) PSP

UNCERTAINTY: How can the risk of SUDEP (Sudden Unexpected Death in Epilepsy) be reduced in people with epilepsy?  (JLA PSP Priority 4)
Overall ranking 4
JLA question ID 0110/4
Explanatory note SUDEP stands for Sudden Unexpected Death in Epilepsy. It occurs when an otherwise healthy person with epilepsy dies suddenly and unexpectedly, and no clear cause of death can be found. It is most likely that more than one cause of SUDEP will be identified. Since most deaths occur after a generalized tonic-clonic seizure, it is likely that the seizure itself is a contributing factor. Possible theories being investigated include changes in breathing patterns, heart rate, or brain function. There may also be a genetic link between seizures and abnormal heart function, meaning that people with epilepsy may be more prone to irregular heart rhythms. However, it is unlikely that all SUDEP-related deaths occur in the same way, and more research is needed to better understand the causes of SUDEP and how the risk can be reduced. 

Maguire, M. J., Jackson, C. F., Marson, A. G., & Nevitt, S. J. (2020). Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP). Cochrane Database of Systematic Reviews(4). doi:10.1002/14651858.CD011792.pub3 

Health Research Classification System category Neurological 
Extra information provided by this PSP
Original uncertainty examples How do I decrease the risk of sudden death? Many of my seizures are nocturnal with violent full body convulsions is there a way of decreasing my risk factor? ~ Why don't we talk about SUDEP? Is it more prevalent than we are led to believe? Any safety measures? ~ managing expectations related to sudden death ~ Preventing SUDEP
Submitted by People with Seizures x 1, Caregivers x 1, Health Care provider x 1, Community Agency Representative x 1
PSP information
PSP unique ID 0110
PSP name Epilepsy (Canada)
Total number of uncertainties identified by this PSP. 96  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 6th & 7th April 2021