Top Ten epilepsy research priorities: A UK priority setting partnership

Abstract

PURPOSE: Research into epilepsy has experienced decades of chronic underfunding compared to other neurological conditions despite its prevalence and seriousness. To evidence the need for greater investment, the Epilepsy Research Institute (formerly Epilepsy Research UK) funded, led and managed a James Lind Alliance (JLA) Priority Setting Partnership (PSP). This "industry standard" methodology brings together healthcare professionals, patients, carers and patient group representatives to identify and prioritise research uncertainties within a defined area of health or care. METHODS: The UK Epilepsy PSP is a once-in-a-generation, national consensus that collated and ranked the research priorities of the UK epilepsy and associated condition community. Following JLA methodology, this 18-month project engaged over 100 patient groups and 5000 people affected by and working in epilepsy, including medics and allied healthcare professionals, from across the UK. RESULTS: Over 5400 priorities were received, with anti-seizure medication, sudden unexpected death in epilepsy (SUDEP) and epilepsy in women among the most frequently reported themes. The responses received were categorised and translated into distinct, researchable questions. Questions were excluded if deemed to be "answered" following an evidence check, while research uncertainties (i.e. unanswered and partially answered questions) formed the basis of a second, shortlisting survey. The shortlisted questions were then discussed and debated at the final workshop by participants that broadly represented the UK epilepsy and associated condition community. The final ranking and Top Ten priorities for research into epilepsy were then agreed. CONCLUSION: The aim of the UK Epilepsy PSP is to encourage and inspire researchers to investigate the research areas prioritised by those most affected by the condition and provide the evidence of need to aid future policy making discussions and support research funding applications.

Publication DOI: https://doi.org/10.1016/j.seizure.2024.12.008
Divisions: College of Health & Life Sciences > Aston Pharmacy School
College of Health & Life Sciences > Aston Institute of Health & Neurodevelopment (AIHN)
College of Health & Life Sciences
Aston University (General)
Funding Information: The UK Epilepsy Priority Setting Partnership (PSP) was funded, led and managed by the *Epilepsy Research Institute UK (formerly Epilepsy Research UK). The Epilepsy Research Institute's mission is to radically advance research into the causes, prevention a
Additional Information: Copyright © 2024 The Author(s). Published by Elsevier Ltd on behalf of British Epilepsy Association. This is an open access article under the CC BY-NC-ND license (https://creativecommons.org/licenses/by-nc-nd/4.0/).
Uncontrolled Keywords: Epilepsy,Gene therapy,SUDEP,Patient and public involvement and engagement
Publication ISSN: 1532-2688
Data Access Statement: The 25 research uncertainties taken to the final workshop, engage-<br/>ment summary, question verification form and data management spread<br/>sheet are available to view on the James Lind Alliance website at the<br/>following address: https://www.jla.nihr.ac.uk/priority-setting-partnerships/epilepsy
Last Modified: 01 Apr 2025 07:11
Date Deposited: 27 Jan 2025 15:30
Full Text Link:
Related URLs: https://www.sci ... 059131124003455 (Publisher URL)
PURE Output Type: Article
Published Date: 2025-02
Published Online Date: 2024-12-15
Accepted Date: 2024-12-07
Authors: Norton, Anna C.
Twohig-Bennett, Caoimhe
Smeaton, Maxine
Marson, Anthony
Armstrong, Jack
Kovac, Adam
Ashby, Samantha
Cock, Hannah
Coxon, Anne
Dickson, Jon M.
Fearon, Abbie
Fuller, Alison
Kinney, Michael
Mayne, Andrée
McLaughlan, Tom
Mitchell, James W.
Pardington, Rosemarie
Pullen, Angie
Shankar, Rohit
Solomon, Juliet
Tittensor, Phil
Wright, Sukhvir (ORCID Profile 0000-0002-5464-3779)
Yandle, Alice
Zuberi, Sameer
Cowan, Katherine
Thomas, Rhys H.

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