The Epilepsy Deaths Register makes every epilepsy death count. If you are over 18 and know about a death in someone with epilepsy, you can help.
A family member, flat-mate or friend might have information about an epilepsy related death that may not be known to anyone else. Please tell us about any death in someone with epilepsy that may be related to their epilepsy. Coroners, doctors and nurses will have medical information that is very important.
This includes deaths 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.
You can report an epilepsy related death straight away or you may wish to wait. Please report as soon as you feel able to. Even if the death may have occurred many years ago, please report it if you want to. Your report will be helpful.
You control the information you provide to the Epilepsy Deaths Register. If you decide to remove your information you can do so at any time. You decide how much time or help you want to give the registry.
The registry produces reports based on anonymised information, all names and identifying information is removed from any published reports.
Your information will remain confidential but if you do indicate that you are willing to take part in further research, we will ask for your written consent before sharing any of your personal or contact information with research teams.
The power of the Epilepsy Deaths Register will increase with every report. You can choose how to report the death to us:
By post: To request a printed questionnaire please either telephone or contact the team here
By telephone: Please call our confidential reporting line: 0330 088 1220 (local call rate from the UK)