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WHAT IS THE UK EPILEPSY PSP?

Have you ever wondered why research on an area of epilepsy that affects you has not been a priority? Have you ever wondered how you could draw attention to this? Have you ever wondered how your opinion would make a difference?

If any of the above has occurred to you (or even if it hasn’t) then we want to hear from you. This national survey is collating the views of the entire epilepsy community – healthcare professionals, epilepsy charities, people living with epilepsy, their families, friends and carers, and those bereaved by epilepsy. The information gathered will help identify and prioritise areas of healthcare that can be improved by research and result in higher quality studies and increased investment.

The rigorous JLA PSP process reveals the Top 10 research questions for a particular condition, in our case epilepsy. The responses to the survey will highlight areas that are important to those affected by the condition in question, but it does not require individuals to 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 need it most.

The scope of the UK Epilepsy PSP will be defined by the health research priorities of people affected by epilepsy:

  • Causes: to include prevention and co-morbidities
  • Diagnosis: to include access to health services
  • Treatments: to include anti-epileptic drugs, surgery, treatment side effects, co-morbidities (including those as a consequence of treatment), and epilepsy that does not respond to treatment
  • Clinical management of epilepsy: to include risk of epilepsy-related deaths (including Sudden Unexpected Death in Epilepsy – SUDEP), service access, neurodevelopment, co-morbidities, social and psychological factors, and emerging areas such as epilepsy in older people
  • Dissemination of research breakthroughs to influence epilepsy care, practice and policy: to include medical education and pathways to improved care

Epilepsy Research UK has committed the funds and resources to undertake the programme and has brought together a steering committee that includes people with a personal connection to epilepsy and clinicians from across the UK, as well as representatives from key epilepsy charities. To ensure we reach as many people as possible, from every walk of life, and every corner of the country, we have also partnered with major patient groups and associated condition and rare epilepsy charities.

Meet the steering committee

Samantha Ashby

Caoimhe Bennett

Hannah Cock

Katherine Cowan

Anne Coxon

Jon Dickson

Abbie Fearon

Michael Kinney

Tony Marson

Andree Mayne

Tom McLaughlan

James Mitchell

Anna Norton

Rosemarie Pardington

Angie Pullen

Rohit Shankar

Maxine Smeaton

Rhys Thomas

Phil Tittensor

Sukhvir Wright

Alice Yandle

Sameer Zuberi

The last JLA priority setting exercise in epilepsy 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.

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

WHY IS THIS THE UK EPILEPSY PSP SO IMPORTANT?

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