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Top 10 Research Priorities

The UK Epilepsy Priority Setting Partnership

Following the nationwide engagement programme we funded and led, the UK Epilepsy Priority Setting Partnership (PSP) announced the Top 10 priorities for research into epilepsy in October 2022. These priorities were established by the UK epilepsy community including people living with and affected by epilepsy, healthcare professionals and patient groups. 

The Top Ten include a broad range of topics, from epilepsy-related deaths, the underlying mechanisms of epilepsy, personalised medicine and brain health. These topics span fundamental neuroscience research, clinical research and novel methodologies, including big data and AI.

  1. What are the causes and contributing factors of epilepsy-related deaths, including Sudden Unexpected Death in Epilepsy (SUDEP), and how can these deaths be prevented?
  2. What underlying mechanisms cause epilepsy in children and in adults?
  3. What impact do epilepsy, seizures and anti-seizure medication (ASMs) have on brain health – including cognition, memory, learning, behaviour and mental health?
  4. How does epilepsy and epilepsy treatment impact neurodevelopment, and can this be managed or prevented?
  5. How can targeted, personalised medicine, such as gene therapy, be used to treat and/or prevent epilepsy?
  6. How can tools, devices and biological markers be used to accurately predict and prevent seizures and the onset of epilepsy?
  7. How do hormonal changes in women throughout the lifespan (puberty, pregnancy, menopause) impact epilepsy, and how can this impact be addressed?
  8. How can quality of life be improved for people with epilepsy, their families and carers, including those bereaved by epilepsy?
  9. What causes drug-resistant (refractory) epilepsy, and how can it be best treated?
  10. How can big data analysis, through artificial intelligence (Al) and machine learning, aid the diagnosis and management of epilepsy?

Thank you

We would like to thank our partner organisations and everyone who completed the landmark UK Epilepsy PSP surveys and participated in the workshops. Together, you helped establish a Top Ten that is truly representative of our community. The #Every1EndingEpilepsy programme and research strategy of the Epilepsy Research Institute have only been made possible through your support, and these evidenced priorities will drive greater investment, guide future innovations and shape the research agenda for the next generation. 

What is the UK Epilepsy PSP?

The once-in-a-generation, national consensus collated and ranked the research priorities of the epilepsy community. It will shape the research agenda for the next generation, increase investment for research into epilepsy and contribute to our mission to radically advance research.

Following the rigorous, well-established JLA methodology, the UK Epilepsy Priority Setting Partnership (PSP) involved people with epilepsy, their families and carers, those bereaved by epilepsy, clinicians and health and social care professionals and patient organisation representatives. Throughout, the epilepsy community championed this partnership.

The UK Epilepsy PSP Steering Group brought together 23 individuals from across the UK, with varied professional and personal experience of epilepsy. We collaborated closely with other major UK epilepsy charities – Epilepsy Action, Young Epilepsy, SUDEP Action, Epilepsy Society and the International League Against Epilepsy (ILAE). We also engaged with over 100 partner organisations, including rare disease and associated condition charities and professional clinical membership associations.

Please contact Anna, UK Epilepsy PSP Coordinator and Research & Involvement Officer, at ukepilepsypsp@epilepsy-institute.org.uk with any questions about the UK Epilepsy PSP.