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