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:

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 

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.

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.

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]

How to register

Report a death

Or by

  • By post: Request a printed questionnaire by telephone, or contact the team here
  • By telephone: Call our confidential line: 01 906 1868 to make an appointment

You can choose to withdraw your registration at any time

The Registry produces reports based on anonymised information, all names and identifying information is removed from any published reports.

Epilepsy Ireland partnered with SUDEP Action to set up the EDRI but the confidential information provided is only available to the EDRI team.

If you have any questions about the register; if you would like support to complete the questionnaire or, if you would like to talk to someone about your loss, please contact our team:

Tel: 01 906 1868
Email: Contact our team