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 set up in 2013.
The EDRI was launched in 2014 and called on the experience and expertise of the Project Management Committee and consulted with bereaved families.
The EDRI operates in line with SUDEP Action’s Principles Underpinning the Register, Statement of Intent and by protocols on privacy and security.
EDRI Steering Committee
Peter Murphy, Epilepsy Ireland
Professor Mark Richardson, King’s College, London
Dr. Elaine Hughes
Dr. Rhys Thomas, Newcastle University
Jane Hanna OBE, CEO, SUDEP Action
Professor Mike Kerr, Cardiff University
Ben Donovan, Special Projects Coordinator, SUDEP Action
EDRI (and EDR) Team
Jane Hanna OBE
Tracy Cowdry
Newcastle University EDR Researchers
Ben Donovan
Vicky Masters-Read
Project Lead
Jane Hanna OBE
Academic Support and Analysis
Dr Rhys Thomas, Newcastle University