The Epilepsy Deaths Register (EDR) works with many international partners to tackle epilepsy-related deaths, including those due to Sudden Unexpected Death in Epilepsy (SUDEP). 

Information provided to the EDR helps understanding both nationally and internationally. 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


International collaborations

The EDR works in collaborations with organisations and research teams around the world. Please contact the EDR team if you are interested in collaborating with the EDR on a future project (Email: [email protected])

How to register

Report a death

Or by

  • By post: Request a printed questionnaire by telephone, or contact the team here
  • By telephone: Call our confidential line: 0330 088 1220 (local call rate from the UK) to make an appointment

You can choose to withdraw your registration at any time

The Registry produces reports based on anonymised information, all names and identifying information is removed from any published reports.

SUDEP Action own and manage the EDR, but the confidential information provided is only available to the EDR team.

If you have any questions about the register; if you would like support to complete the questionnaire or, if you would like to talk to someone about your loss, please contact our team:

Tel: 0330 088 1220
Email: Contact our team