Why does the Register exist?
Epilepsy is among the top ten causes of premature death. Epilepsy Deaths are usually sudden and are devastating for families, as well as being distressing for professionals.
National statistics show reported epilepsy deaths are highest in the young age group, but give no insight into exactly what happened or why the person died. If we want to prevent future epilepsy deaths, we need to find out what happened in as many cases as possible. That is why research teams and doctors and nurses have asked SUDEP Action to set up the deaths register.
Until the Register was established, there was no single place where relevant information was collected.
How does it help?
The information from the register will help:
- co-ordinate involvement in research
- improve public awareness of epilepsy-related risk and SUDEP
- identify and prioritise new research
- decide where best to put funding to improve services
- improve advice and treatment plans.
Who can register a death?
You can register the death no matter who you are including:
- Relative and friends (as long as you are over 18)
- Doctor or nurse, carer or social worker
- Coroner, procurator fiscal or pathologist.
It does not matter if the same death has already been registered, as the more information the research team has on each death, the better. Even if you are not sure if the death was linked to the person’s epilepsy, we would like to know about it.
What type of death should be reported?
Please let us know about any death reported as or suspected to be:
- SUDEP (Sudden Unexpected Death in Epilepsy)
- Any 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.
How do I register a death?
- fill in the form online in five minutes at epilepsydeathsregister.org
- print a form from sudep.org and post it
- phone our local rate number 0330 088 1220.
If you phone, you will be helped through the process of providing information and given any emotional support you may need. You will be asked a few questions about the person who has died. It does not matter if you do not know the answers to all the questions.
The team at SUDEP Action
Our Epilepsy Deaths Registry team has:
- over 50 years’ combined expertise in SUDEP and epilepsy deaths
- international and national honours for excellence in the field
- experience of involving people in research
- taken the lead in the last National Sentinel Clinical Audit of Epilepsy-Relate research. Support is provided by Dr Henry Smithson and his research team at Sheffield University and by King’s Health Partners, one of five Academic Health Sciences Centres in England. Our expert advisory panel includes international experts in SUDEP, epilepsy deaths and in register development.