GOVERNANCE
The Epilepsy Deaths Register is owned and operated by SUDEP Action, registered charity 1164250 (England & Wales), SC047223 (Scotland). Epilepsy Bereaved (founded 1995) is part of SUDEP Action. Registered office is 18 Newbury Street, Wantage, Oxon, OX12 8DA.
The Board of Trustees meets at least four times a year and receives reports on The Epilepsy Deaths Register as well as the minutes of the steering group of The Epilepsy Deaths Register. At least 50% of the Board of Trustees are themselves bereaved by epilepsy.
The Epilepsy Deaths Register operates in line with the Principles Underpinning the Register; Statement of Intent and by protocols on privacy and security.
EDR Steering Committee
Sammy Ashby, SUDEP Action
Dr. Rhys Thomas, Newcastle University
Dr. Elaine Hughes, Evelina Children’s Hospital
Professor Mike Kerr, Cardiff University
Ben Donovan, SUDEP Action
Tracy Cowdry, SUDEP Action
Register Team
Sammy Ashby
Tracy Cowdry
Newcastle University EDR Researchers
Ben Donovan
Vicky Masters-Read
Register Team
Sammy Ashby
Academic Support and Analysis
Academic Support and Analysis
How to register
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
