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.

Project Management Committee

Professor Stephen Brown, SUDEP Action

John Hirst CBE, SUDEP Action (Chair)

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

Professor Mark Richardson, King’s College, London

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

Professor Henry Smithson, University of Cork, Ireland

Jane Hanna OBE, CEO, SUDEP Action

Professor Mike Kerr, Cardiff University

Ben Donovan, Special Projects Coordinator, SUDEP Action

Professor Ley Sander, University College, London

Professor Sanjay Sisodiya, University College London

Register Team

Jane Hanna OBE

Tracy Cowdry

Ben Donovan

Vicky Masters-Read

Project Lead

Jane Hanna OBE

Academic Support and Analysis

Dr Rhys Thomas, Newcastle University