Epilepsy Deaths Register

Making every epilepsy death count

Governance

Governance

The Epilepsy Deaths Register is a collaborative project between Epilepsy Ireland, SUDEP Action, University College Cork and the University of Sheffield.

The Epilepsy Deaths Register operates in accordance with the Memorandum of Understanding between Epilepsy Ireland and SUDEP Action and in line with the Principles Underpinning the Register; Statement of Intent and by protocols on privacy and security.

The Project Management Committee meets at least once a year to provide expert oversight of the Epilepsy Deaths register for Ireland.  Minutes of the meetings are reported to the trustees of Epilepsy Ireland and SUDEP Action.

Project Management Committee

  • Professor Stephen Brown, SUDEP Action
  • Peter Murphy, Chief Executive, Epilepsy Ireland
  • Jane Hanna OBE, SUDEP Action
  • John Hirst CBE, SUDEP Action (Chair)
  • Dr Lina Nashef, Consultant Neurologist, King’s College Hospital NHS Foundation Trust
  • Karen Osland, 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. Associate Professor Exeter Medical School.
  • Professor Sanjay Sisodiya, University College London
  • Professor Henry Smithson, University of Cork, Ireland

Register Team

The register team is responsible for operating the EDR for Ireland and meets at least six times a year.  The Joint-Chairs from Epilepsy Ireland and SUDEP Action report to the Board of Trustees of Epilepsy Ireland and SUDEP Action respectively and to the Project Management Committee.

  • Professor  Henry Smithson Department of General Practice, UCC
  • Peter Murphy, CEO Epilepsy Ireland (Joint-Chair)
  • Ms Jane Hanna, SUDEP Action  registry team (Joint-Chair)
  • Karen Osland, SUDEP Action registry team
  • Tracy Cowdry, SUDEP Action registry team
  • Wendy Crampton,  Epilepsy Ireland
  • Brigitte Colwell SUDEP Researcher Academic Unit, Sheffield

 

Please note that access to personal data on the register is on a need to know basis and is restricted to the staff that operate the UK and the Ireland Register:

Jane Hanna OBE        

Karen Osland Dip. Couns Registered Member MBACP          

Tracy Cowdry Dip. Couns Registered Member MBACP

Confidentiality is part of their professional training and day to day expertise.  All other members of the register team have access to anonymised data only.

 

Academic Support and Analysis

Professor Henry Smithson, University of Cork

Brigitte Colwell, Senior Researcher, Sheffield University

 

Ireland Expert Advisory

The Register team is supported by an expert advisory panel led by Professor Smithson

About the Register

About the Register
Who can register?

How to Register

How to Register
Expert Team