Epilepsy Research UK is proud to be supporting The EPSET Project, which is developing the first-ever Core Outcome Set (COS) for adults with epilepsy to ensure issues important to patients are considered and consistently measured in all clinical research. The study is led by Dr James Mitchell and colleagues at the University of Liverpool and involves international collaborators and people with lived experience of epilepsy from across the globe.

What are core outcomes and why are they needed for epilepsy?

When investigating epilepsy, researchers often use data collected from patients in the clinic. To determine whether treatments are effective and safe, researchers tend to measure things like how often seizures occur, treatment side effects and the number of hospital visits a person makes. In research into epilepsy, this data can vary widely. This presents difficulties when combining and comparing results from different studies, which can lead to less impactful and less relevant research.

The EPSET Project aims to find out which outcomes are most important for people with epilepsy and should always be measured. The team will undertake a Core Outcome Set (COS) study to develop a standardised list of outcomes that should be reported as a minimum in all studies known as randomised controlled trials. This information is gathered to ensure issues important to patients, as well as healthcare professionals and researchers everywhere, are considered. At present, no COS exists for adults with epilepsy.

Who is involved in The EPSET Project?

The project is led by Dr James Mitchell and clinical research colleagues at the University of Liverpool including Dr Adam Noble, Prof Tony Marson and Prof Paula Williamson. The EPSET Project International Working Group is supporting the study, which includes healthcare professionals from Europe, North America, Australia and Asia. As such, the EPSET survey has been made available in eight different languages to ensure international representation. Most importantly, people with lived experience of epilepsy have been involved in the study from an early stage.

How to get involved

The EPSET Project wants to hear from:

– adults with epilepsy
– families and carers of people with epilepsy
– healthcare professionals
– researchers working in epilepsy clinical trials
– members of patient advocacy groups

Those who take part will complete two online surveys to identify which outcomes are most important to them. Some participants will also be invited to an online consensus meeting at a later date.

To register your interest in taking part, please follow the link below.

Register your interest

Registration for the first survey will close on 29th June 2022.

If you have any questions, please contact epset@liverpool.ac.uk.  

To hear about more opportunities to get involved in research, you can join our Shape Network here.