SUDEP Action

Making every epilepsy death count
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The Epilepsy Deaths Register

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The Epilepsy Deaths register needs your help to gather vital information.
     Please tell us if you know of the death of someone with epilepsy, or of someone 
who was awaiting diagnosis.


Epilepsy is one of the top ten causes of death in young people (early or premature deaths).  Researchers, Doctors, government and local health and social services urgently need information if they are to:

  • Reduce epilepsy related deaths
  • Decide where best to put funding to improve services for people with epilepsy
  • Improve epilepsy advice and treatment plans
  • Identify and prioritise new epilepsy research
  • Improve public awareness of epilepsy-related risk including Sudden Unexpected Death in Epilepsy (SUDEP).

It is easy to participate.  You choose how, when and how much you want to help.   The registration takes around 5 minutes and following that you can choose whether to continue on to our survey and 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.

A death can be reported more than once and can be reported by anyone as family, friends, neighbours and colleagues may have different information.  Multiple reports will help us to build a more complete picture of the lifestyle and choices made by the person who died.  The information received is confidential and is only available to the Epilepsy Deaths Register team.

You can also choose to withdraw your registration at any time.

Please use our local rate phone line for any questions.

Tel: 0330 088 1220