Toggle Main Menu Toggle Search

Open Access padlockePrints

Learnings from deaths – the Epilepsy Deaths Register

Lookup NU author(s): Dr Rhys ThomasORCiD



This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).


© 2019 Elsevier Inc.The Epilepsy Deaths Register (EDR) differs from typical registries which concentrate primarily on clinical information. It is completed by bereaved relatives and focuses on the circumstances immediately before, and the support following, a death. It can be augmented by copies of death certificates from the families of the deceased, and all epilepsy associated deaths can be entered. The EDR is underpinned by the research and experience of the SUDEP Action team and the clinical advisors who helped design the methodology and the web-based platform. The EDR has been open since 2013 and currently has over 750 entries from over 20 different countries, the majority from the United Kingdom and the Republic of Ireland. The bereaved have shown that they place their trust in the register as a vehicle to be involved in research, even under the most difficult of circumstances. As the EDR matures, we hope to identify the common and rarer patterns of epilepsy-associated death; maintaining our dual ambitions to remain committed to listen, and to make every death count. This paper is for the Special Issue: Prevent 21: SUDEP Summit - Time to Listen.

Publication metadata

Author(s): Thomas RH, Osland K

Publication type: Review

Publication status: Published

Journal: Epilepsy and Behavior

Year: 2019

Volume: 103

Pages: ePub ahead of print

Print publication date: 01/02/2020

Online publication date: 17/08/2019

Acceptance date: 26/07/2019

ISSN (print): 1525-5050

ISSN (electronic): 1525-5069

Publisher: Academic Press Inc.


DOI: 10.1016/j.yebeh.2019.106454