Each year Epilepsy Action is involved in a range of research studies. These can be projects we are funding or where we are partners or collaborators in the research. Below is news about the current projects we are involved with.

Funded research

The role of resilience for good quality of life in epilepsy and factors promoting such resilience

Professor Ann Jacoby, University of Liverpool

Some people with epilepsy describe their life as good, others say life could be better. By talking to people about their experiences, we hope to understand more fully, what helps people with epilepsy enjoy a good quality of life. This study was approved by the North West Multi-Centre Research Ethics Committee. We hope to recruit up to 70 people to take part in face-to-face interviews. Three interviews have been completed so far (audio recorded and transcribed). The information people provide will help us to think about how we might help people with epilepsy to experience best possible quality of life in the future. 

• Read more about this research

Sleep quality and daytime neurobehavioral functioning in childhood epilepsy

Dr Catherine Hill, University of Southampton

The project has received ethical and research governance approvals and has now started.

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UK Anti-Epileptic Drug Register

Dr Udo Wieshmann. The Walton Centre for Neurology and Neurosurgery, Liverpool

The project is still awaiting research governance approval.

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Neuropsychological profiles of patients with juvenile myoclonic epilepsy and their siblings

Dr Susan Duncan, Western General Hospital, Edinburgh

The project has received ethical and research governance approvals and research started on 1 October 2009.

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PhD studentship: Conversational analysis in epilepsy encounters: third party references and accompanying others.

Supervisors: Professor Paul Drew, University of York and Dr Markus Reuber, University of Sheffield

Student: Ms Catherine Crowe

Catherine began her PhD studentship on 1 October 2009. In her first year Catherine will be undertaking training in research methodology, applying for ethical permissions and making a start on data collection.

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Identifying and monitoring the cost effectiveness of the epilepsy specialist nurse

Professor Fiona Irvine, Liverpool John Moores University

This research is examining the role of the epilepsy specialist nurse (ESN). Amongst other things, it will look at tasks carried out by ESNs that would otherwise be done by the consultant. The research team at has completed a survey and focus groups with epilepsy specialist nurses and a survey of neurologists. They are now carrying out case studies in four hospitals. The final report will be available in early 2010.

The research is supported by UCB Pharma through an educational grant 

Developing an epilepsy care plan

Dr George Kernohan, Ulster University

The NICE Guidelines recommend that people with epilepsy should have a care plan that describes their epilepsy, treatment, need for regular reviews and life style issues. The aim of this project is to design a care plan that will meet the needs of people with epilepsy. Focus groups have been held across Northern Ireland to explore the needs and views of people with epilepsy. Work has now started on drafting the plan itself. The project will be completed by the end of 2009, and the care plan will be available in early 2010.

The research is supported by UCB Pharma.

ESRC CASE Studentship

Supervisors: Professor Jonathan Gabe and Dr Graham Smith, Royal Holloway, University of London.

Epilepsy Action is part funding this four year (1+3) PhD studentship. The title of the research is ‘Families with children with epilepsy: decision making at diagnosis and beyond’. The studentship will start in September 2010 and a student will be recruited January 2010.

Collaborative research

National Epilepsy 12 Audit

This study is looking at the quality and delivery of care for children and young people with suspected and diagnosed epilepsy. It is being led by Dr Colin Dunkley, a paediatric neurologist, and co-ordinated at the Royal College of Paediatrics and Child Health. Epilepsy Action is a collaborator on the project and sits on the Advisory Board.

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•  Link to completed projects