0330 088 1220

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About The Register

The Epilepsy Deaths Register (EDR) was set up in 2013 by SUDEP Action, after their experience and expertise in supporting and involving people bereaved by epilepsy-related death was recognised by research teams and health professionals.

SUDEP Action and the EDR team worked with experts, in consultation with bereaved families when creating the register.

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.

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

The EDR Team work with and offer support to anyone wishing to provide their information about an epilepsy death. The EDR Team is supported by leading experts and researchers.

The EDR is the largest and most powerful collection of information on epilepsy deaths in the world

 

FUNDING

 

Thank you to those of you who have supported the EDR from the start, especially all the bereaved families who turned their private pain into public purpose and made the register possible.

The Epilepsy Deaths Register (EDR) does not receive any statutory funding, although the work is vital to help reduce unnecessary deaths from epilepsy, improve the lives of those living with epilepsy and deliver better care and support after an epilepsy-related death.

An initial educational grant was provided by Viro-Pharma. The Register is currently funded by SUDEP Action from donations made and money raised by their supporters (including those bereaved by epilepsy), and from small grants.

If you would like to support the EDR with this vital work by making a donation, please contact the EDR team.
Tel: 0330 088 1220 (local call rate from UK) 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