The Child Health Research Centre in Queensland is leading an Australia-wide three-year multi-centre study to enable early effective sleep interventions to improve functional outcomes and quality of life in children with neurodisability:

• Queensland Children’s Hospital (QCH)- Associate Professor Jasneek Chawla
• Children’s Hospital at Westmead (CHW)- Professor Karen Waters
• Royal Children’s Hospital Melbourne (RCH) – Dr Moya Vandeleur

The Objective of the study is to improve quality of life and functional outcomes in children with ND by modifying sleep.  The Overall goal is to develop NATIONAL guidelines for the diagnosis and management of sleep problems in children with neurodisability.  Fragile X syndrome is one of the conditions that sits within the banner of neurodisability.

Phase 1 of this study (a survey) is investigating three research questions:

1.What is the prevalence of sleep problems in children with neurodisability?
2.What are the sleep health priorities for families of children with neurodisability (consumer perspective)?
3. What are the current management strategies used to treat sleep problems in children with neurodisability?

The SURVEY has 4 sections and takes around 20 minutes to complete.
LINK TO SURVEY: https://redcap.link/sleepsurvey_childrenwithneurodisability_2022