Childhood Narcolepsy
Research type
Research Study
Full title
CHILDHOOD NARCOLEPSY: FROM MECHANISMS TO TREATMENT STRATEGIES – a pilot study to investigate childhood narcolepsy phenotypes and genotypes.
IRAS ID
330302
Contact name
Heather Elphick
Contact email
Sponsor organisation
Sheffield Children's NHS Foundation Trust
Duration of Study in the UK
0 years, 10 months, 2 days
Research summary
Narcolepsy is a lifelong neurological sleep disorder characterised by excessive daytime sleepiness and attacks of muscle weakness triggered by emotions (called cataplexy). Narcolepsy has a devastating impact on a child’s life. Children experience fractured night time sleep, hallucinations, sleep paralysis and weight gain. These symptoms have a detrimental effect on mental health, quality of life, relationships and school performance. There is a lack of research investigating methods for improving the lives of children with narcolepsy.
The aim of this series of studies is to provide the most comprehensive clinical description of childhood narcolepsy to date and investigate causative factors, with the aim of finding new treatment strategies.In this study of 30 children, we aim to:
• Measure weight, food intake and activity as well as the impact of other conditions that are more common in children with narcolepsy including autism, obesity and early puberty;
• Perform genetic tests to investigate whether these are involved in childhood narcolepsy.
• Perform exercise tests to assess aerobic fitness.By completing these assessments, we will understand more about the causes and impact of childhood narcolepsy and this knowledge may lead to improved treatments in the future. The results will directly benefit the patients involved in the study as they will be used to recommend specific support for their individual difficulties.
In future studies, we will recruit more children from Sheffield and elsewhere in the UK to extend the study above and to include more detailed metabolic testing as well as a dietary intervention study.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
23/NE/0194
Date of REC Opinion
25 Oct 2023
REC opinion
Favourable Opinion