A group of epilepsy charities, clinicians, researchers and people with epilepsy have joined forces to identify which areas of epilepsy need to be prioritised for research.
The group is part of Epilepsy Research UK’s (ERUK) James Lind Alliance (JLA) Priority Setting Partnership (PSP) which was launched this week. It includes Epilepsy Action, Young Epilepsy, SUDEP Action and Epilepsy Society, as well as ERUK.
The process that the JLA PSP will use will identify the most important themes around epilepsy for people with the condition and reach a top 10 of research questions for epilepsy. Researchers and funders will then devise the most meaningful research projects within those areas, aiming for them to support those who need it most.
The JLA PSP will consider causes and prevention of other related conditions, access to health services for diagnosis, and treatments for epilepsy, drug-resistant epilepsy, side-effects and related conditions. They will also look at risk of epilepsy-related deaths, social and psychological factors, epilepsy in older people, medical education and pathways to improved medical care.
A similar JLA priority setting activity was done 12 years ago by consultant neurologist Dr Rhys Thomas, who will also lead the current group.
Dr Thomas said: “A new study is long overdue, the outcomes for which would benefit people living with epilepsy by providing the evidence of need and priorities to support research development. We know that PSPs can lead to increased funding from NIHR [National Institute for Health Research], which is so urgently needed for epilepsy, given the shocking inequalities in research funding.”
Angie Pullen, research and healthcare projects programme lead at Epilepsy Action, said:
“We are really pleased to be encouraging people participation in agreeing priorities for the future of epilepsy research. Knowing directly from people with epilepsy and their loved ones about what is really important to them is key to helping us to drive forward positive change.
“When the priorities have been agreed we will be able to make the case for more research funding for epilepsy and how care can be improved for people affected by the condition.”
ERUK will fund and provide the resources for the programme to establish research priorities.
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