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A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular DisordersExplored Youth with Neuromuscular Disorders perceptions of health, health behaviors and healthcare engagement
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Aspects of speech-language abilities are influenced by MECP2 mutation type in girls with Rett syndromeThis study investigates relationships between methyl-CpG-binding protein 2 gene (MECP2) mutation type and speech-language abilities in girls with Rett syndrome.
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The relationship between maternal psychiatric disorder, autism spectrum disorder and intellectual disability in the child: a composite pictureResearch conducted by this laboratory has previously published four papers examining the relationship between maternal psychiatric disorders and having a...
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Family satisfaction following spinal fusion in Rett syndromeWe evaluated family satisfaction following spinal fusion in girls with Rett syndrome
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How can clinical ethics guide the management of comorbidities in the child with Rett syndrome?This paper reviews the disorder Rett syndrome and evidence for the management of scoliosis and poor growth within a clinical ethics framework
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Quantitative and qualitative insights into the experiences of children with Rett syndrome and their familiesEarly presentation of Rett syndrome, including regression and challenges for families seeking a diagnosis
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The Sibling ProjectThe Sibling Project focuses on the wellbeing, relationships and needs of children, adolescents and emerging adults who have a sibling with a developmental disability.
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Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorderValid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness.
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Effectiveness of current digital cognitive behavioural therapy for insomnia interventions for adolescents with insomnia symptoms: A systematic review and meta-analysisSleep problems occur in up to 20%-45% of adolescents. This systematic review and meta-analysis examined the effectiveness of digital sleep interventions, based on cognitive behavioural therapy for insomnia, for adolescents with insomnia symptoms. The objective was to synthesise and quantify, through meta-analyses, changes in sleep following completion of a digital sleep-based intervention.
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The NDIS at ten years: designing an equitable scheme for the next decadeJenny Downs BApplSci (physio) MSc PhD Program Head, Development and Disability 08 6319 1763 Jenny.Downs@thekids.org.au Head, Child Disability Areas