Expert Teams

The Epilepsy Deaths Register (EDR) is supported by and draws on the combined experience and expertise of national and international experts in epilepsy.

The EDR management team has:

  • Over 50 years’ combined expertise of SUDEP and epilepsy deaths
  • Experience involving people in research
  • Led the last Sentinel Clinical Audit of Epilepsy-Related Deaths
    • Our Project Management Committee includes international experts in SUDEP, epilepsy deaths and in registry development.

For further information please click on the sub-headings below:

The Epilepsy Deaths Register (EDR) 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 EDR as well as the minutes of the EDR steering group.

The EDR was launched in 2013. The design and development stage called on the experience and expertise of the Project Management Committee (see below for details) and consulted with bereaved families. It is now an integral part of the day-to-day working and services provided by SUDEP Action. 

The EDR operates in line with the Principles Underpinning the Register, the Statement of Intent and by protocols on privacy and security.

EDR Steering Committee

Jane Hanna OBE

Professor Mike Kerr

Dr Rhys Thomas

Dr Elaine Hughes

Ben Donovan

EDR Team

Jane Hanna OBE

Sammy Ashby

Ben Donovan

Tracy Cowdry

Vicky Masters-Read

Newcastle University EDR Researchers

Project Lead

Jane Hanna OBE

Academic Support and Analysis

Dr Rhys Thomas, Newcastle University

Jane Hanna OBE

Professor Mike Kerr

Dr Rhys Thomas

Dr Elaine Hughes

Ben Donovan

The Steering Committee is responsible for the overall management of the EDR and consults regularly to review and agree work programmes; collaborations and recommend research projects that go to the SUDEP Action Board for approval.

Academic Support & Analysis (Appointed Research Team – Newcastle University)

Lead:  Dr Rhys Thomas

The appointed research team provides first line academic and analysis support to the EDR including research papers, posters and highlighting research opportunities.

Lead: Jane Hanna OBE

Tracy Cowdry

Ben Donovan 

Sammy Ashby

Vicky Masters-Read

Newcastle University EDR Researchers (Appointed research team)

The EDR team manage the day to day operation of the EDR and work within the strict confidentiality guidelines of the EDR.  They regularly report to the EDR Steering Committee and to the SUDEP Action Board of Trustees.

The EDR team consulted bereaved families and professionals in its design and development prior to its launch in 2013.

The Epilepsy Deaths Register (EDR) 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 EDR was launched in 2013. The design and development stage called on the experience and expertise of the Project Management Committee and consulted with bereaved families, it is now an integral part of the day-to-day working and services provided by SUDEP Action.

SUDEP Action and their supporters are grateful for the dedication of those professionals who gave their time and expertise setting up the EDR. The register provides information for vital research into epilepsy deaths.

Project Management Committee: 

Professor Stephen Brown, SUDEP Action

Jane Hanna OBE, SUDEP Action

John Hirst CBE, SUDEP Action (Chair)

Professor Mike Kerr, Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University

Dr Lina Nashef, Consultant Neurologist, King’s College Hospital NHS Foundation Trust

Ben Donovan,  SUDEP Action

Professor Mark Richardson, King’s College, London

Professor Ley Sander, University College, London

Dr Rohit Shankar, Cornwall Partnership NHS Foundation Trust and Hon. Assoc. Professor Exeter Medical School

Professor Sanjay Sisodiya, University College London

Professor Henry Smithson, GP, Acting Head of the Sheffield Academic Unit of Primary Care

For any enquiries please contact us by 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