Helping to shape the future of research
What matters most to you about epilepsy research? What are the outcomes that are most important to you? If you could sit down with a researcher, what would be the top three priorities that you would like to them to focus on in their epilepsy research?
We believe that research offers the greatest hope of seizure freedom for people with epilepsy. One third of those with the condition do not respond to current treatment options which means that there are 200,000 people in the UK who live every day never knowing whether plans will be railroaded by a seizure.
It could be a seizure at work, in the supermarket, halfway through a film or a cup of coffee. It could be a seizure mid-afternoon that leaves children waiting at the school gate, wondering where Mum or Dad are.
That is why research is so important for us at the Epilepsy Society. It is our driving force and we have some of the world’s most eminent scientists working tirelessly to understand more about the complexities of the condition and why some seizures remain stubbornly resilient to treatment.
It is also why we are joining forces with our friends in other UK charities, to find out what matters most to you, the people affected by epilepsy, when it comes to research. We are carrying out a national survey – the UK Epilepsy Priority Setting Partnership – to find out what your priorities are for the future of epilepsy research.
The UK Epilepsy Priority Setting Partnership is looking to collate views from across the epilepsy community including people with epilepsy, their family, friends, carers and healthcare professionals. We want you to tell us your priorities for research so that we can identify and prioritise the areas of epilepsy healthcare that can be improved by research, resulting in higher quality studies and increased investment.
Feedback from the survey will be analysed to identify all questions which remain unanswered by current research. These will then form part of an interim survey where people who took part in the initial survey will be asked to shortlist their priorities from the list. If you would like to take part in the interim survey but did not give your contact details when you filled in the original survey, you can do so here.
The top ten priorities for epilepsy research will then be determined from this list by a Priority Setting Workshop. This will include a maximum of 30 individuals affected by epilepsy, either personally or professionally.
More information
You can read more about research at the Epilepsy Society here.
And you can listen to Professor Sanjay Sisodiya, our Director of Genomics, explaining how genomics could help tailor epilepsy treatments to each individual person's needs.