A new epilepsy research study is launching today at the King’s College London Institute of Psychiatry, Psychology and Neuroscience (IoPPN) in Camberwell.

The study is being run by the CASTLE epilepsy research project with support from the National Institute for Health Research (NIHR).

Its aim is to investigate the effect of sleep on sufferers of childhood epilepsy, and those leading the research said it is putting patients and their families at the forefront of the process.

Announcing details of the study, the NIHR said that it aimed to circumvent the side effects of drugs used to treat younger epilepsy patients that can often have an adverse affect on their learning.

NIHR said: "Drugs for preventing epileptic seizures often slow down a patient’s thinking and learning so the study will address if new treatments that focus on getting enough sleep will avoid the need for these drugs and improve the quality of life for children with epilepsy."

The UK health service added that families affected by epilepsy worked with health experts to create the study, having an active role in its design and implementation, an approach known as Patient and Public Involvement (PPI) and one that is becoming increasingly popular in research studies in the UK.

Childhood epilepsy affects over 60,000 children in the UK.

One of the people invited to take part in the study was Deborah Roberts, whose daughter, Sara, had epilepsy from the age of 8 to the age of 17. Deborah herself has had epilepsy since the age of 12.

She met and collaborated with researchers as a PPI representative on the CASTLE study for four years.

Ms Roberts said: "I’ve had epilepsy since I was 12. At school you get bullied for being a nutcase. It’s not a talked about issue.

"Teenage years are terrible. It can happen anytime and so it restricts what you can do: You can’t drive, you can’t go swimming with school friends and you can’t drink on your mediation."

"This study isn’t just about epilepsy, it’s about how it effects the whole person...(the) study is looking for the best treatment for the child in the long run and it should show what’s better – for instance, if they’re on the medication or not."

Professor Deb Pal from the IoPNN in Camberwell is leading the study as its chief investigator.

Mr Pal said that the approach of using a PPI-based study would be integral to getting the best possible outcomes for patients and their relatives.

Mr Pal said: "Parents and young people have guided us in asking the right questions, meeting the right objectives, in designing all our study materials, in reviewing all our study procedures.

"I don’t think we would have made the choices we made and kept the research focus as pin sharp on patients in the NHS if we had been working without Patient and Public Involvement."

Find out more about the CASTLE study from the study website here: http://castlestudy.org.uk