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:
Governance
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 (Chair)
Professor Mike Kerr
Dr Rhys Thomas
Dr Elaine Hughes
Ben Donovan
EDR Team
Jane Hanna OBE (Chair)
Sammy Ashby
Ben Donovan
Tracy Cowdry
Vicky Masters-Read
Newcastle University EDR Researchers
Academic Support and Analysis
Dr Rhys Thomas, Newcastle University
EDR Steering Committee
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.
EDR Team
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.
Project Management Committee
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
Original Project Management Committee:
Professor Stephen Brown, SUDEP Action
Jane Hanna OBE, SUDEP Action
Professor Mike Kerr, Welsh Centre for Learning Disabilities, School of Medicine,
Cardiff University
Karen Osland, Dip. Couns Reg. MBACP,
SUDEP Action
Professor Henry Smithson, GP, Acting Head of the Sheffield Academic Unit of Primary Care
For any enquiries please contact us by email: [email protected]