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Epilepsy charities collaborate on vital new Priority Setting Partnership for research

Epilepsy Research UK has today announced the launch of a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to establish the future research priorities of epilepsy.

The PSP will bring together clinicians, patient groups and people affected by epilepsy to identify and prioritise areas of healthcare that can be improved by research. Leading UK epilepsy charities Epilepsy Action, Young Epilepsy, SUDEP Action, Epilepsy Society and Epilepsy Research UK will work together to oversee this milestone investigation into the priorities of people living with epilepsy.

What is the James Lind Alliance Priority Setting Partnership?

The JLA is a non-profit making initiative, established in 2004.  It brings patients, carers and clinicians together in PSPs.  These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area.  Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that.  The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians.  The National Institute for Health Research (NIHR – coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.

What is involved in the JLA PSP process?

The rigorous JLA PSP process reveals the Top 10 research questions for a given condition. This shortlist highlights areas that are important to those affected but does not necessarily come up with specific research questions. The Top 10 may include broader areas of interest where patients, carers and health professionals have agreed a need for research exists. Researchers and funders can then prioritise the most meaningful research for those who will benefit most from it.

“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

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.

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 will lead the steering group for the 2021 initiative.

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