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.
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.
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 firstname.lastname@example.org with any questions about the UK Epilepsy PSP.