Paediatric SUDEP Registry
investigator: Dr Elizabeth Donner, Hospital for Sick Children, Toronto, Ontario (Canada)
The Canadian Paediatric Surveillance Program (CPSP)
is currently surveying paediatricians for cases of SUDEP. Each month, paediatricians are asked if they know of a child lost
to SUDEP. The goal of this project is to determine an estimated rate of SUDEP in Canadian children. It will also determine
how often an autopsy is performed when a child with epilepsy dies unexpectedly and will describe common features among SUDEP
in children. As well, this program will help to improve overall awareness of SUDEP among Canadian paediatricians.
More information is available here
If you have lost a child, 18 years old or younger, to SUDEP between January 2014 and December 2015, and are
based in Canada, please email the Paediatric SUDEP Registry at email@example.com or call the Registry Coordinator, Kathleen Exconde, on (416) 813-7654 ext. 203654. By contacting the team, you will
help the study to achieve a more accurate incidence of SUDEP in children.
Physicians can also contact the
Registry, if they have not reported the death through CPSP.