Research into epilepsy deaths and SUDEP is 'number 1 priority'
Establishing the ‘causes and contributing factors of epilepsy-related deaths, including SUDEP – and how these deaths can be prevented’ – is the number one priority for epilepsy research, according to a new study announced today.
The UK Epilepsy Priority Setting Partnership (PSP), which SUDEP Action is part of, announced their top 10 priorities for epilepsy research, following a nationwide 18-month engagement programme involving patient groups, people affected by epilepsy and healthcare professionals. The project drew 5,000 survey responses, with 55% of these coming from people living with epilepsy.
Jane Hanna, SUDEP Action CEO, welcomed the announcement, saying: “This recognition by the PSP of how research can better understand, explore and tackle epilepsy deaths, including SUDEP, is a positive step towards saving more lives. The myth that epilepsy does not kill and that there is nothing that can be done to prevent SUDEP and epilepsy deaths is now widely accepted as fake news. SUDEP Action began from five women sitting round a table, wanting answers, over two decades ago. Our community of families and research champions have taken a subject that was taboo and filled a vacuum with research evidence and family experiences.”
Jane believes too many research teams who have worked with SUDEP Action over the years have been turned down for funding because SUDEP was not considered a priority.
She said: “We know, and have shown for over 25 years, that research and action in this area can save lives. This was clearly highlighted in 2018 at our Prevent 21 Summit, when members of the epilepsy community joined us in agreement that research funding into tackling epilepsy deaths was an urgent priority. Our 2020 Lives Cut Short report reinforced the urgency of this.”
UK Epilepsy PSP Lead Dr Rhys Thomas said, “The top 10 research priorities for epilepsy will help shape the research agenda for the next generation. The outputs from this study will 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, which is so urgently needed for epilepsy, given the shocking inequalities in research funding."
This year, SUDEP Action is continuing to research and develop interventions as young deaths increase beyond 21 each week and inequalities widen.
* SUDEP Action would like to thank everyone who took part in the project, either by completing surveys or attending workshops.