Registry of Pediatric SUDEP
Elizabeth Donner, SickKids/UofT (Canada)

SUDEP Aware's co-founder, Dr Elizabeth Donner, has been awarded a grant from CURE to implement Canada's first registry of SUDEP deaths in children.

SUDEP is estimated to account for 34
% of sudden deaths of individuals aged 1-20 years old (Wren, C et al 2000).

The very nature of SUDEP calls for urgent research, with the ultimate goal of preventing these deaths.  To that end, the objective of Dr. Donner’s research is to determine risk factors identifying those children at greatest risk of SUDEP and to ascertain possible protective measures.  This will be carried out using a network of collaborators across
Canada.  The team will implement a pediatric SUDEP registry, by attempting to collect data on every child in Canada
with a sudden death and epilepsy, for future analysis.  

Once the project is underway, contact information for families will be made available and progress updates will be posted to this website.

CURE 2009 Henry Lapham Memorial Award

Source: Discussion with Dr Donner, Nov 2009