Sleep easy with OI
Research type
Research Study
Full title
Pilot study to investigate sleep and breathing related complications in children with osteogenesis imperfecta
IRAS ID
222137
Contact name
Nicki Barker
Contact email
Sponsor organisation
Sheffield Children's NHS Foundation Trust
Duration of Study in the UK
1 years, 2 months, 31 days
Research summary
Children with the rare bone disease osteogenesis imperfecta (OI) suffer from difficulty sleeping and breathing problems during sleep, which can affect their long term physical and mental health.
Although commonly reported, we do not fully understand how many children are affected, the specific causes (and hence the most effective treatment) and how best to identify these sleep related breathing problems.
A clinical study is required to investigate the frequency, severity and potential causes. It also needs to identify when a sleep and breathing assessment should be performed, and what is the most time and cost effective way of doing this.
To help us design such a study, we will carry out a project with two main activities:
• A participation project with families to ensure that we fully understand their problems, and that their views and needs are considered.
• A pilot study to ensure that we have the right study design, that it is achievable and that children and families will be able to take part.This project will be funded by The Children's Hospital Charity. Once successfully completed, we will apply for funding for the large scale clinical study.
Following the completion of our research programme, we will be able to offer targeted treatments to improve the lives of children with OI. In the longer term, we also aim to create a screening programme to prevent children suffering unnecessarily from undetected sleep and breathing related problems.
REC name
London - Queen Square Research Ethics Committee
REC reference
17/LO/0733
Date of REC Opinion
28 Apr 2017
REC opinion
Favourable Opinion