Rest-Ed Study

Date: 23rd February 2022

Would you like to learn more about your child’s sleep?

Children with Down’s syndrome (Ds) experience a higher incidence of sleep problems than their typically-developing peers. Untreated sleep problems in children (with and without Ds) can lead to sleepiness, behavioural and emotional problems, cognitive impairment, reduced quality of life and reduced academic achievement.

A study by Dr Rebecca Stores at the University of Portsmouth a number of years ago demonstrated that group education of parents using a video and booklet can offer some benefit regarding behavioural sleep problems in children with Ds. A study is currently underway in Scotland, by researchers and sleep specialists from the Royal Hospital for Children and Young People in Edinburgh, to evaluate the effectiveness of an updated version of the education package on the sleep and quality of life of young children with Ds and their parents/carers. Should the revised package prove effective, it is hoped that it will be made available to families across the country, both with and without Ds.

REST-Ed, funded by a grant from Edinburgh Children’s Hospital Charity, are looking to recruit parents/carers of young children (aged 6m to 5yr) with Ds living in Scotland to take part in the evaluation process. You can download a flyer about the study here.

If you would like to participate in this study, please email the REST-Ed team at loth.rested@nhslothian.scot.nhs.uk, or speak to the lead investigator, Dr Florian Gahleitner on 0131 312 0453. 

We are running a number of Grab a Cuppa sessions with Dr Patricia D Jackson about the study for parents who want more information or have any questions about the study. Patricia worked as a Consultant Paediatrician in NHS Lothian and having retired from clinical practice she has maintained her honorary attachment to the University of Edinburgh, and this has allowed her to continue her research interests. The Rest-ED research project links two of those interests, improving the lives of children with Down’s syndrome, and Sleep. Patricia is also pleased and privileged to be the current Vice Chair of Down’s Syndrome Scotland. You can find out more about these sessions and sign up to join us via Hub 21.