Epilepsy collaboration aims to identify key epilepsy research priorities
Epilepsy Research UK has announced the launch of a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to establish the future research priorities for epilepsy.
Epilepsy Research UK has committed the funds and resources to undertake the programme with a steering committee comprising stakeholders from leading epilepsy charities, clinicians from the four nations and people living with and affected by epilepsy. SUDEP Action are directly involved in this process and will be working with the group to make sure there are opportunities for the voices of those bereaved by epilepsy to be represented as part of the work.
The last JLA priority setting exercise in this area was undertaken over 12 years ago by Dr Rhys Thomas, Consultant Neurologist and Neuroscientist, with the Wales Epilepsy Research Network. Dr Thomas (who is also a lead researcher on SUDEP Action's Epilepsy Deaths Register, as well as collaborating with the charity on other epilepsy risk research) will lead the steering group for the 2021 initiative.
"A new study is long overdue, the outcomes of 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, which is so urgently needed for epilepsy, given the shocking inequalities in research funding." Dr Rhys Thomas
"It is great to have the opportunity to work with other epilepsy organisations, and the James Lind Alliance, to better understand what things really are priorities for people living with epilepsy, their families, carers, health professionals, and importantly for us at SUDEP Action, to those who have been suddenly bereaved by epilepsy. Often the voices of the bereaved are left out of research, so this is an exciting chance to hear from the whole epilepsy community on what is important to them - so we can help shape future research together in a way which matters." Sammy Ashby, SUDEP Action Deputy Chief Executive (who is part of the project).