Epilepsy is a serious neurological condition that can lead to an increased risk of death. Sudden Unexpected Death in Epilepsy (SUDEP) accounts for around half of these deaths.
There are at least 21 epilepsy related deaths a week in the UK
At least 42% of these deaths are potentially avoidable with better knowledge and access to services.
The Epilepsy Deaths Register (EDR) is a safe and secure platform for those bereaved by epilepsy, and for professionals, to provide information about the deaths of people with, or suspected to have had, epilepsy.
Learning more about epilepsy deaths allows researchers to build a better picture of the condition and help keep people safer in the future. Information provided to the EDR helps research teams carry out new research, which could help learn lessons from those who have died, in the hope of also saving future lives.
We value your trust and your information will remain confidential. We do not disclose to anyone that information has been provided.
Contributing information to the EDR helps to:
- Shine a light on key findings and themes through annual anonymised reports – helping educate and raise awareness of epilepsy risks and the impact of bereavement
- Highlight gaps in services for people with epilepsy and for those bereaved by epilepsy
- Support the development of information and safety tools to better support professionals, people with epilepsy & their families
- Prompt reviews in practice and encourages lessons to be learnt – in the hope of improving services and saving future lives