SUDEP ePetition campaign
Why is your support of this petition so important?
SUDEP is the leading cause of epilepsy-related death but we currently neither have an understanding of why it happens nor an accurate measure of its incidence.
Most often death occurs during sleep and is unwitnessed. This means that the study of SUDEP relies heavily on the content, precision and completeness of death certificates (for case identification) and autopsy/medical notes (for case investigation).
Therefore, obtaining accurate and reliable research data is not easy, with barriers including issues such as:
Insufficient, or lacking, death investigator awareness/knowledge about SUDEP (for example, in the absence of seizure evidence at the scene, an unknowing investigator may not inquire whether the deceased had a history of seizures and the possible involvement of epilepsy in the cause of death will be missed);
Failure to conduct an autopsy (which is a necessity for ‘definite SUDEP’ diagnosis and an important investigatory tool for the diagnosis by exclusion SUDEP requires);
Inconsistency in the reporting of cause of death as SUDEP on death certificates (instead of stating SUDEP it may be listed as unknown, epilepsy, seizures etc).
Of particular concern to us in Canada are the variances in the investigation and recording of epilepsy-related deaths across the different provinces and territories served by either a Coroner or Medical Examiner system but with no overarching federal authority. Also, the lack of a centralized record, or national database, listing all our Canadian adult and child cases.
We need to know how many people we are losing to SUDEP in Canada each year; and we need to provide our researchers with as much accurate and true data as possible to help improve our understanding of how to prevent it.
To help achieve this, WE ARE CALLING ON THE GOVERNMENT OF CANADA to provide some level of national standardized investigation and reporting requirement for epilepsy-related deaths across the country and the collation of records in a central database to assist researchers.
But, we need your help! We need your support to demonstrate how many of us this issue impacts and the level of importance it holds.
Please, SIGN OUR PETITION and encourage your Canadian families & friends to join you in support too!!
You can share the direct link: https://bit.ly/2RQxssQ
Please note, there is no minimum age requirement but eligible signatories must be either a resident of Canada or a citizen of Canada (whether living in Canada or abroad). See the Guide for Signatories for more information.
120 day ePetition closes February 12, 2019 10:07 a.m. (EDT)
How have other countries begun to address this?
The Royal College of Pathologists ‘Guidelines on Autopsy Practice Scenario 6: Deaths associated with epilepsy’ (2005, currently under review and to be completed by the end of 2018).
SUDEP be noted on the death certificate & the case be filed with the North American SUDEP Registry [as at Sept 2018, includes State of New York, State of Illinois & State of New Jersey]
Medical Examiner training about SUDEP [State of New Jersey]