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        Research

        Adapting a measure of gross motor skills for individuals with CDKL5 deficiency disorder: A psychometric study

        Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD. ...

        Research

        A process and impact evaluation of use of a Powered Wheelchair Standing Device by boys with Duchenne muscular dystrophy

        Graham Jenny Peter Hall Downs Jacoby GL JA PJ BAppSci PhD CRFS FANZSRS FThorSoc FERS BApplSci (physio) MSc PhD BA (Hons) MSc Honorary Research ...

        News & Events

        Elders insight leads to spine-tingling breakthrough

        Dr Michael Wright remembers the 'aha' moment while working with distressed Nyoongar families to identify what was limiting engagement with services. ...

        Research

        Modifiable child and caregiver factors that influence community participation among children with Down syndrome

        To investigate modifiable child and caregiver factors influencing community participation among children with Down syndrome. ...

        Research

        Systematic Review and Meta-analysis: Mental Health in Children

        The behavioral phenotype of neurogenetic disorders associated with intellectual disability often includes psychiatric comorbidity. The objectives of this systematic review and meta-analysis were to systematically review the prevalence of psychiatric disorders and symptoms in children and adolescents ...

        Research

        Survival of children and adolescents with intellectual disability following gastrostomy insertion

        Whilst gastrostomy insertion was associated with lower survival rates than children without gastrostomy, survival improved with time ...

        Research

        Risk of Hospitalizations Following Gastrostomy in Children with Intellectual Disability

        Gastrostomy was associated with health benefits including reduced all-cause and epilepsy hospitalizations, but was not protective against acute LRTI ...

        Research

        Twenty years of surveillance in Rett syndrome: what does this tell us?

        This study aimed to describe overall survival and adult health in those with Rett syndrome. ...

        News & Events

        Telethon Kids Institute researchers take out prestigious Premier’s Science Awards

        Three outstanding researchers have won 2023 Premier’s Science Awards, with another inducted into the prestigious WA Science Hall of Fame. ...

        News & Events

        International clinical trial reduced lung inflammation in young kids with cystic fibrosis

        Promising results from an Australian-led clinical trial could drastically change the way we care for young children with cystic fibrosis (CF). ...

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