Expert Teams
The Epilepsy Deaths Register for Ireland (EDRI) is supported by and draws on the combined experience and expertise of Irish, UK and international experts in epilepsy; epilepsy mortality; epilepsy research and in supporting people bereaved by epilepsy.
The EDRI 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 for Ireland (EDRI) 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 Epilepsy Deaths Register for Ireland (EDRI) is a collaborative project between Epilepsy Ireland and SUDEP Action, based on the UK Epilepsy Deaths Register that was set up in 2013.
The EDRI was launched in 2014. It is a collaboration between Epilepsy Ireland and SUDEP Action and is managed by the same professional team that manage the UK-based register. The EDRI development stage consulted and was supported by professionals.
The EDRI operates in line with the Principles Underpinning the Register, the Statement of Intent and by protocols on privacy and security.
EDRI Steering Committee
Jane Hanna OBE
Peter Murphy
Professor Mike Kerr
Dr Rhys Thomas
Dr Elaine Hughes
Ben Donovan
EDRI 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
EDRI Steering Committee
Jane Hanna OBE
Peter Murphy
Professor Mike Kerr
Dr Rhys Thomas
Dr Elaine Hughes
Ben Donovan
The Steering Committee is responsible for the overall management of the EDRI and consults regularly to review and agree work programmes; collaborations and may recommend research projects to the Epilepsy Ireland and SUDEP Action boards for approval.
Academic Support & Analysis (Appointed Research Team – Newcastle University)
Lead: Dr Rhys Thomas
As the appointed research team for SUDEP Action, Newcastle University provides first line academic and analysis support to the EDR including research papers, posters and highlighting research opportunities.
EDRI Team
Lead: Jane Hanna OBE
Tracy Cowdry
Ben Donovan
Sammy Ashby
Vicky Masters-Read
Newcastle University EDR Researchers (Appointed research team)
The EDRI team manage the day to day operation of the EDR and are the same time that manage the SUDEP Action registry. They are the only people with access to personal details submitted to the register and work within the strict confidentiality guidelines of the EDR. The EDRI team provides anonymised reports to the EDRI Steering Committee and to both Epilepsy Ireland and SUDEP Action.
The EDRI team consulted bereaved families and professionals in its design and development prior to its launch in 2013.
Project Management Committee
The Epilepsy Deaths Register for Ireland (EDRI) 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 Epilepsy Deaths Register for Ireland (EDRI), launched in 2014, is a collaborative project between Epilepsy Ireland, and SUDEP Action.
Epilepsy Ireland and their supporters are grateful for the dedication of those professionals who gave their time and expertise setting up the EDRI. 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)
Peter Murphy, Epilepsy Ireland (Co-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, Professor Emeritus, University College Cork
For any enquiries please contact us by email: [email protected]