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Trial to answer dilemma of treating childhood epilepsy?

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Professors from Edge Hill University are involved in one of the largest ever clinical trials to find the best treatment approaches for children with epilepsy, which is launching today.

CASTLE, Changing Agendas on Sleep, Treatment and Learning in Epilepsy, is one of the only trials to compare antiepileptic drugs against active monitoring with no medication, and Edge Hill’s Professors Bernie Carter and Lucy Bray are playing a pivotal role in the project, leading the work that engages children, parents and families in informing and shaping the study.

The CASTLE trial is launching on Purple Day, the international family-focused epilepsy awareness day on March 26th, and the University’s main building will be lit up in purple in support. A total of 28 NHS Trusts across the UK have already signed up to take part in the trial, and the researchers are aiming to enrol 300 children with rolandic epilepsy.

Rolandic epilepsy is the most common form of childhood epilepsy, affecting around 10,000 young people in the U.K. Seizures usually happen at night and affect children between the ages of five and 12 before tapering off in adolescence.

Treating epilepsy with drugs to reduce seizures has traditionally been the goal of medical treatment. However, the drugs used to treat epilepsy often slow down a child’s thinking and learning and because children with rolandic epilepsy ‘grow out’ of their seizures, doctors and parents often don’t know whether to treat children or not.

The CASTLE research programme, which is led by King’s College London and the Evelina London Children’s Hospital, focuses on more than seizures, to consider the wider aspects of living with rolandic epilepsy that are of importance to families, such as children’s learning, sleep, behaviour, self-esteem and mood. Families have been central to the research programme in guiding the best ways to measure health and quality of life for children.

Edge Hill’s Bernie Carter, Professor of Children’s Nursing, said:

“Within this national trial, Professor Lucy Bray and I are going to be interviewing children and their parents about their experiences of rolandic epilepsy, sleep problems and issues relating to taking medication.  These interviews are really important as they will help us understand more about how children and their parents think the treatments and interventions work and find out what, if any, problems they have had to deal with.  Without understanding how treatments and interventions work in the real world, we can’t know if they will be properly effective.”

The trial will compare two licensed drugs, comparing their effects to active monitoring with no medication. NICE guidelines recommend treatment with the standard epileptic drug carbamazepine which is very effective at preventing seizures but can have negative impacts on learning. A newer drug called levetiracetam might be just as effective but without impacts on learning but has not been evaluated in a rigorous clinical trial for rolandic epilepsy.

A second key aim of the CASTLE trial is testing whether improving sleep can reduce seizures. The researchers have developed the world’s first online sleep behaviour intervention especially for epilepsy, which teaches parents how to encourage good sleep in their children. The trial will test how well the sleep intervention works both with and without medication for seizures.

Professor Paul Gringras from Evelina London Children’s Hospital, and co-leader of the trial, said:

“Sleep and seizures are intimate bedfellows. There is a vicious cycle whereby seizures and medications can affect sleep, but broken or insufficient sleep can also increase likelihood of seizures. This sleep disruption has huge impact on whole families, with mothers of children with epilepsy rarely getting more than four hours a night. We are asking a simple but vital question – can improving a child’s sleep reduce their seizures and improve their and their parents’ well-being?”

The trial is funded by £2.3 million from the National Institute of Health Research and brings together a wealth of expertise from UK research institutions, including the University of Liverpool, Edge Hill University, the University of Exeter, Oxford Brookes University and Bangor University.

Families interested in taking part are encouraged to speak to their paediatrician or epilepsy nurse. More details on taking part are available online:  castlestudy.org.uk/take-part

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