The Epilepsy Deaths Register (EDR) was set up in 2013 by SUDEP Action, after their experience and expertise was recognised by research teams and health professionals. The register team worked in consultation with bereaved families.
Knowing why people with epilepsy have died allows researchers to build a better picture of the condition and help keep people safer in the future. The register is available to record the deaths of anyone who had or was suspected to have epilepsy, even if epilepsy wasn’t stated as the cause of death, or if an inquest is still ongoing.
This includes deaths 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 in people with epilepsy reported as status epilepticus
· accidental deaths in people with epilepsy
· deaths from suicide in people with epilepsy
· deaths reported as cause unknown in people with epilepsy
A death can be reported at any time, even if the death happened some years previously. The power of the Epilepsy Deaths Register will increase with every report, all information received is valuable
The same death can be reported more than once, by family, friends, flat-mates, neighbours and colleagues as they may have different information. Multiple reports will help to build a more complete picture of the lifestyle and choices made by the person who died. The register also accepts information from professionals.
If you feel able to provide information, you can choose how much information to give and when and how you do it. Firstly, you need to set up a personal account and register the death which takes around 5 minutes. Following that you can decide whether to continue to our survey (part 2 of the questionnaire) to provide further detailed information. The survey will take at least 30 minutes to complete and will be available for you to complete over 7 days if you choose to register online, this can be extended by contacting our team.
One of our experienced team members is always at hand and can support you throughout the process or take information from you by appointment.
We value your trust and your information will remain confidential. If within the questionnaire you do indicate you are willing to take part in further research, we will ask for your further consent before sharing any of your personal or contact information
How to Register:
v Online: Complete our on-line registration form
v By post: Request a printed questionnaire by telephone, or contact the team here
v By telephone: Call our confidential line: 0330 088 1220 (local call rate from the UK)
You can choose to withdraw your registration at any time.