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.
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