Why it matters
The CASTLE study is focused on Rolandic epilepsy which is the most common type of epilepsy – affecting about one-sixth of all children with epilepsy in the UK – that means over 10,000 people! We use the simple term “rolandic epilepsy” although you may also hear it referred to as “benign rolandic epilepsy” or “benign childhood epilepsy with centrotemporal spikes.” Children with Rolandic epilepsy find that their learning, sleep, behaviour, self-esteem and mood are also often affected, and the condition can cause stress in the family.
What we are doing
Treating epilepsy with drugs to reduce seizures has been the traditional goal of medical treatment. However, just reducing seizures doesn’t necessarily make much difference to the way children and parents feel. The drugs used to treat epilepsy often slow down a patient’s thinking and learning. Experts used to believe this was an acceptable price to pay to reduce seizures. However, with rolandic epilepsy where children ‘grow out’ of their seizures in teenage years, we don’t know if is better to treat these children with drugs or not, especially if this might have a negative effect on their learning. This is something that parents are also very concerned about.
In order to address these uncertainties, we will work with children, parents, doctors and nurses to choose the best ways to measure health and quality of life for children with epilepsy.Then we will compare three groups of children: those on the standard drug treatment, those taking a newer drug that doesn’t impact on thinking and learning as much, and those on no drug treatment. We will examine which is best to improve children’s health and quality of life.
The research will also include talking to parents and children about their experiences in relation to sleep, taking medication, learning and how taking part in the study has impacted on them. Two parents of children with epilepsy will advise on the study throughout its duration and a team of researchers will work with parents and children to learn about their experiences.
Most children with epilepsy have sleep problems and wake in the night. Disturbed sleep in turn reduces learning ability and can also trigger seizures. Parents often get up to check on their child in case s/he is having a seizure, and sometimes sleep with the child because they are worried. This can make the parent very tired the next day, and affect their stress and concentration levels. We will adapt an existing sleep behavioural treatment to the sleep problems experienced by parents of children with epilepsy. Then we will test how well it works compared to standard treatment in a randomised controlled trial.
To guide, inform and support all of this research, children with rolandic epilepsy and parents of children with rolandic epilepsy will have an opportunity to play a meaningful role in the research process – follow this link if you would like to learn more about how to be part of our Advisory Groups.
When will this study be recruiting?
Recruitment will occur across years 2-4 of the trial, beginning September 2018. In the first phase, we will be inviting parents and young people to help us to decide the appropriate outcome measures, and we will also be developing a sleep intervention package, again with the involvement of parents and young people. The clinical trial begins in the second phase, which will be midway through 2018 and will run until 2023.
Who can take part?
Children diagnosed with rolandic epilepsy, who have an EEG that supports the diagnosis.
Who is conducting the research?
This is a programme of research led by Prof Deb Pal at Kings College London and Prof Paul Gringras at Evelina London Children’s Hospital, with a large team of clinical and scientific experts as well as parents and young people. The study will receive £2.3 million in funding.
Who has reviewed this study?
The study has been peer reviewed through the National Institutes of Health Research. It is awaiting ethical approval.