The CASTLE research programme 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 “childhood 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.
The CASTLE 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 received £2.3 million in funding from NIHR.
What we are doing in the CASTLE programme?
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. Other issues are of equal importance, among them the quality of children’s and parents’ sleep.
The CASTLE programme has developed the world’s first core outcome measure set for childhood epilepsy, known as CHOICE. CHOICE was co-created with young people, parents and professionals and its findings and recommendations are contained in four published papers. We hope that researchers will use CHOICE to broaden their thinking on what is important to measure in future childhood epilepsy research and how to measure it.
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 have adapted existing sleep behavioural packages for children, both for typically developing and those with autism and ADHD, to the sleep problems experienced by parents of children with epilepsy.
CASTLE Sleep-E clinical trial
The development of this new intervention “COSI” will be comparatively evaluated against standard care in a randomised controlled trial, the CASTLE Sleep-E trial.
To guide, inform and support all of this research, children with epilepsy and parents of children with epilepsy are central in advising on all aspects of the research process.
Who is conducting the research?
The CASTLE Study is led by Professor Deb Pal at Kings College London and Professor 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 is funded by NIHR under the Programmes for Applied Research theme.
Who has reviewed this study?
CASTLE Sleep-E is a non-CTIMP clinical trial and is awaiting final review and ethical approval ahead of an anticipated launch in March 2021.