Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely, and no cause of death is found;
SUDEP is a serious concern to our approximately 300,000 (or 1 in 100) Canadians living with epilepsy;
Studies estimate a loss of 1 in 1000 people with epilepsy per year, with the rate approaching 1 in 100 per year in people with frequent seizures that are poorly controlled with medications;
Main barriers to collating accurate statistics for Canada include a lack of awareness about SUDEP and variances in the investigation and recording of SUDEP deaths across the different provinces;
SUDEPs most often occur during sleep and are unwitnessed, so researchers rely heavily on death certificate content (for case identification) and depth of autopsy/medical notes (for case investigation);
With no consistent reporting requirement across Canada, or national SUDEP database, the completeness of the data is uncertain; and
Diagnosis of ‘definite SUDEP’ requires the exclusion of other causes of death by autopsy, yet neither conducting an autopsy nor enquiring about possible epilepsy history (even in the absence of seizure evidence) is a mandatory requirement in epilepsy-related sudden death investigations across all provinces.
We, the undersigned, citizens of Canada, call upon the Minister of Health to implement:
1. The development, and overseeing, of a standardized approach to the measurement, investigation and reporting of sudden deaths involving epilepsy across Canada; and
2. The collation of Canadian epilepsy-related death data in a centralized repository to assist SUDEP researchers and help prevent further loss.
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