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Families could help shape major study hoping for epilepsy breakthrough

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Families with children with epilepsy are being asked to help shape a major study funded by the National Institute of Health Research that could provide a breakthrough in treatment for the condition.

Professors at Edge Hill University are looking for parents of children with rolandic epilepsy, the most common form of childhood epilepsy, to join their patient and public involvement advisory panel for the study.

CASTLE, Changing Agendas on Sleep, Treatment and Learning in Epilepsy is a six-year study, led by Kings College London, which includes a clinical trial measuring the effectiveness of two different epilepsy drugs in terms of children’s sleep, alertness and ability to learn.

Testing an older commonly prescribed drug against a newer prescription drug and a placebo, the study hopes to provide a breakthrough in drug choice and treatment for the condition.

Professor Lucy Bray who is leading the advisory panel work for CASTLE, said: “Finding parents, carers, children, with experience, past or present of rolandic epilepsy is absolutely vital to this project.

“They’re the ones who will have had to make decisions first hand about treatment. Some parents report that they can find it difficult to balance controlling seizures against their child’s alertness and ability to learn.

“That’s why this whole programme and the clinical trial within it is so important and could help so many families faced with diagnosis in the future.”

She added: “We want to make sure everything we do in CASTLE is family focused and this is an opportunity for families across the North of England to join our panel and have their say. Volunteers don’t need any special skills; we are just keen to hear their opinions.

“There’s no huge time commitment, we can meet face to face or chat over the phone or Skype and in return we can offer a goodwill payment.

“We’re hoping there will be some exciting and influential results from across the study so anyone involved could play a major role in the future of epilepsy treatment.”

If you are interested in joining the panel or would like more information please contact Lucy Bray on brayl@edgehill.ac.uk @LucyBray9 or 07864 959184.

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