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The Epilepsy Research Institute UK – a pivotal moment for epilepsy research

Professor Matthew Walker

Chair of Trustees, Epilepsy Research Institute

- Ending epilepsy

Matthew Walker is Professor of Neurology at UCL Queen Square Institute of Neurology and Epilepsy Research UK’s Chair. At a Reception at The Francis Crick Institute on 16th May 2023, Matthew unveiled our plans to become the Epilepsy Research Institute UK. In today’s Research Blog, Matthew discusses the impact the Institute will have in radically advancing research into epilepsy in the UK. 

Yesterday, in an auditorium full of many of the UK’s top epilepsy researchers, I had the honour of announcing Epilepsy Research UK’s plan to become the Epilepsy Research Institute UK.

As a community, we appreciate the role research plays in developing innovations for people living with epilepsy. Every study is a step forward in our understanding, and every collaboration is strengthening our efforts against this devastating condition. The Epilepsy Research Institute UK, when it launches formally in October, will be a pivotal moment. Over the past decade we have seen research deliver significant advances in the treatment and care of epilepsy. Progress has been made in the areas of drug development, genetics and gene therapy, surgical interventions, and treatment trials.

Yet we still need to breakthrough and find the underlying causes of epilepsy for those 65% of people for whom there is no known cause. We need to address drug-resistant epilepsies for the 35% of people who are not able to control their seizures with medication. And we need to understand what the causes and contributing factors are of epilepsy-related deaths, including Sudden Unexpected Death in Epilepsy (SUDEP), and how those can be prevented. Critically however, there are key factors that up until this point have been holding us back from progressing this research as quickly as we need to.

Despite decades of research, the epilepsy research ecosystem is still fragmented. One of the challenges is that epilepsy is a symptom of many other brain diseases – for example it can occur after having a stroke or head injury, as part of dementia or as part of neurodevelopmental disorders. And research into epilepsy can fall under these different research fields, often resulting in siloed working.

Moreover, research into epilepsy simply hasn’t been a burning platform for policy makers and institutional funders. They have not recognised its importance and its societal impact. We know that there is a compelling case – the return on investment could lead to substantial cost savings to the NHS and will make life changing differences to people affected by epilepsy. Our voice has often not been loud enough, and our research roadmap has not been clear enough.

This lack of visibility has resulted in chronic underinvestment in epilepsy research. Despite being one of the most prevalent, serious neurological conditions, affecting at least one in thirty people at some time in their lives, epilepsy research funding is disproportionately less than other neurological conditions. Research into epilepsy receives only 7% of neurological research funding and just 0.3% of the £4.8 billion total spent on health-related research in the UK.

The Epilepsy Research Institute UK is our opportunity to bring about the change that is so urgently needed and break through the barriers that are holding us back. The Institute will be a central hub for the epilepsy research ecosystem. Where we can promote collaboration between those working in research in universities, in the NHS, in industry, and with funders and patient organisations. Where we can expedite innovations for the 630,000 people living with epilepsy in the UK through increased strategic research investment, capacity building, and research translation, and where people with epilepsy, their carers and families can get involved in all aspects of research.

The Institute will bring together all the many varied strands of epilepsy research. High quality research cannot be achieved by a single person in a single lab. Many of the discoveries require strong collaborations between different disciplines including clinicians, neuroscientists, engineers, mathematicians and data scientists. And this extends across the UK, where the best can be brought together in multi-centre collaborative projects. The Institute will be fundamental in helping us develop our UK capacity, and will have a global impact.

The Institute will also play a key role in bringing the research communities and charities together under a shared vision and mission, and the support and involvement of our Founding Partners – Young Epilepsy, Epilepsy Action, Epilepsy Scotland, and the International League Against Epilepsy British Branch – will be crucial in realising this. As an Institute, we will be able to involve all researchers working on epilepsy, not just those funded by Epilepsy Research UK.

Crucially, the Institute will also drive strategic investment into epilepsy research, through the work of the national research collaborative #Every1EndingEpilepsy. Through this programme, we are already working to design and deliver a research roadmap and campaign to drive strategic investment so we can create a strong, vibrant and well-funded epilepsy research ecosystem.

There has never been a better time to harness the recent unprecedented advances in science, medicine and technology for the benefit of people living with epilepsy. And there has never been a better time to form the Epilepsy Research Institute UK. And it starts here…