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.
Research teams are finding out more about epilepsy-related deaths, including SUDEP. However, there is still much more work to be done to prevent future deaths.
Knowing why people with epilepsy have died, allows researchers to build a better picture of the condition and helps keep people safer in the future. Sharing information by reporting 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.
“More than a keeper of stories – it’s a catalyst for change”
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 EDR is the largest and most powerful collection of information on epilepsy deaths in the world
What To Report
The death of anyone who had or was suspected to have had epilepsy even if epilepsy wasn’t stated as the cause of death, or if an inquest is still ongoing.
This includes deaths in people with epilepsy reported as or suspected to be:
- SUDEP (Sudden Unexpected Death in Epilepsy)
- a sudden death in someone with evidence of a seizure that cannot be explained
- deaths reported as status epilepticus
- accidental deaths
- deaths from suicide
- deaths reported as cause unknown
Each report is treated confidentially, and all data used by researchers is anonymised
When To Report
A death can be reported at any time, even if the death happened some years previously.
You can share your information with the EDR as soon as you feel able to. You do not have to wait until any investigations are complete.
If you are unsure if you have enough information, please contact the EDR team.
The power of the Epilepsy Deaths Register will increase with every report, all information received is valuable.
Who Can Report
Anyone over 18, with information about a death can provide information to the EDR. More than one person can report the same death as they may have different information to give, for example:
- Relatives, flat-mates and friends
- Health professionals, carers and social workers
- Coroners, procurators fiscal and pathologists
We value your trust and your information will remain confidential. We do not disclose to anyone, even within the same family, that information has been provided
Reporting from outside the UK
If you live outside the UK you may still register on the EDR as we work with many international research teams. However, you may also wish to contact the EDR team direct to find out if there is a registry, or any research projects in your country which you could also support.
How To Report
In order to report information to the EDR, you will first need to set up an account. You will then be able to access a questionnaire. You do not need to answer all the questions but please provide as much information as you are able to. You do not have to complete the questionnaire at one time. You are able to save progress and may take up to 7 days, or longer by arrangement with the EDR team, to complete.
- Set up a personal account
- Proceed to the questionnaire and, in Part 1, provide information about who has died (takes around 5 minutes)
- Continue on to the next part of the questionnaire, if you wish, to provide more information to help us understand more about the person who died, how their condition affected them, their lifestyle choices and the events leading to their death
Within the questionnaire you will be given the opportunity to agree to be involved in future research.
The latest 2019 Guideline from the Royal College of Pathologists recognises both the Epilepsy Deaths Register and the specialist support available from SUDEP Action.