Top Ten epilepsy research priorities: A UK priority setting partnership

Area of Science:

• Neurology
• Public Health
• Health Services Research

Background:

• Epilepsy research faces chronic underfunding compared to other neurological conditions.
• The James Lind Alliance (JLA) Priority Setting Partnership (PSP) methodology engages diverse stakeholders to identify research priorities.
• The Epilepsy Research Institute funded a national PSP to address this funding gap.

Purpose of the Study:

• To evidence the need for increased investment in epilepsy research.
• To identify and prioritize research uncertainties within the UK epilepsy community.
• To guide future policy-making and research funding applications.

Main Methods:

• An 18-month national consensus project following JLA methodology.
• Engagement with over 100 patient groups and 5000 individuals affected by or working in epilepsy.
• Collating, ranking, and shortlisting over 5400 research priorities through surveys and a final workshop.

Main Results:

• Over 5400 research priorities were submitted, with key themes including anti-seizure medication, sudden unexpected death in epilepsy (SUDEP), and epilepsy in women.
• Priorities were categorized into researchable questions, with answered questions excluded.
• A final workshop involving broad representation from the epilepsy community agreed upon the Top Ten research priorities.

Conclusions:

• The UK Epilepsy PSP aims to stimulate research in areas prioritized by those most affected by epilepsy.
• The identified priorities provide evidence of need to support policy discussions and funding applications.
• This initiative seeks to improve research investment and outcomes for individuals with epilepsy.