Trial to answer dilemma of treating childhood epilepsy

One of the largest ever clinical trials in children with epilepsy, which has just been launched, aims to find out which treatment approach works best for children and their families. The nationwide CASTLE trial, led by Professor Deb Pal from King’s College London and Professor Paul Gringras from the Evelina London Children’s Hospital, and in collaboration with Professor Dyfrig Hughes from Bangor University, is one of the only trials to compare antiepileptic drugs against active monitoring with no medication.

The CASTLE trial was launched on Purple Day, the family-focused epilepsy awareness day on March 26th, and 28 NHS Trusts across the UK have already signed up to take part. 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 happen most often at night and affect children between the ages of 5 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. Because children with Rolandic epilepsy ‘grow out’ of their seizures, doctors and parents often don’t know whether to treat children or not, and many families choose no medication.

The CASTLE research programme 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.

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 Dyfrig Hughes from Bangor University’s Centre for Health Economis and Medicines Evaluation, says:
"Besides the clear importance of determining which treatment is most effective, it is important also for the NHS to know which is cost-effective. Our work will involve balancing the benefits against the costs to identify which provides greatest value for money to the NHS."

Families interested in taking part are encouraged to speak to their paediatrician or epilepsy nurse. More details on taking part are available online:

Publication date: 28 March 2019