The Paediatric Narcolepsy Project

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This research programme is investigating school performance and well-being in children with narcolepsy aged 8-16 years old. The project has been set up by The University of Leeds and has received ethical approval from the School of Psychology's Research Ethics Committee (ref: 15-0198, date: 03.08.15). The research is taking place in the United Kingdom and in the Republic of Ireland.

The objectives of this study are to document and compare the cognitive and psychological profiles of children with narcolepsy (aged 8-16 years) and gender and aged matched controls in order to identify areas of impairment which may impact on their academic performance and well-being. Children’s sleep quality and duration is measured objectively (using portable polysomnography) and day time activity levels are recorded using actigraphy to understand how sleep measures and daytime activity levels are associated with cognitive and psychosocial outcomes. Understanding the impact narcolepsy has on the daily life of children will enable the design of effective interventions that may help to reduce the impact of this condition on educational and psychological outcomes. The overall aim is to understand the best ways to support young people with narcolepsy so that they can live healthy, fulfilling lives.

We are still looking for families across the UK and Republic of Ireland to take part in this research. If you would like to hear more about the project, receive the study information sheets or if you would like to participate, please get in touch with Jane Blackwell (Researcher) via:

Email: J.E.Blackwell14@leeds.ac.uk

Facebook: www.bit.ly/TheNarcolepsyProject

Twitter: www.twitter.com/ThePNarcolepsyP

Web: www.bit.ly/janeblackwell

Information Sheets (click to view or download):

Information sheet for 8-12 year olds

Information sheet for 13-16 year olds

Information sheet for parents or guardians