Epilepsy is one of the top ten causes of death in young people (early or premature deaths)
If you are reading about The Epilepsy Deaths Register (EDR), you have probably experienced an epilepsy-related death. You possibly know about, or, have heard of Sudden Unexpected Death in Epilepsy (SUDEP) and you may also know that there are many questions that desperately need an answer.
The register provides:
- a single-point for people to provide information for research into epilepsy deaths
- reports which highlight the experiences of people with epilepsy and the bereaved
- support for those helping research by providing information on epilepsy deaths
- coordinated involvement in research / information for approved teams
Research teams are finding out more about epilepsy-related deaths, including SUDEP. However, there is still much more work to be done, if we are to raise awareness of the risks of the condition and reduce unnecessary deaths from epilepsy. Access to vital information about deaths in people who had, or who were suspected to have epilepsy is needed so that new research can be carried out.
The EDR offers a safe place for people to report details of an epilepsy-related death and to provide further information about the lifestyle choices made by the person who died, where available. This information allows researchers to look beyond the numbers of deaths and look at awareness of risk and other factors.
The Epilepsy Deaths Register set up in 2013 is endorsed by the UK government and promoted by professional and patient organisations around the UK
Researchers, doctors, government and local health and social services urgently need information to:
- Reduce epilepsy-related deaths
- Improve epilepsy advice and treatment plans
- Identify and prioritise new epilepsy research
- Improve public awareness of epilepsy-related risk including SUDEP
- Decide where best to put funding to improve services for people with epilepsy
The Registry produces reports based on anonymised information, all names and identifying information is removed from any published reports.
SUDEP Action own and manage the EDR, but the confidential information provided is only available to the EDR team.
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