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        61-72 of 419 results for 'working together'

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        Investigating the impact of developmental coordination difficulties across home, school, and community settings: Findings from the Australian Impact for DCD survey

        To evaluate the participation difficulties experienced by children with developmental coordination disorder in home, school, and community environments.   ...

        Research

        Sleep-disordered breathing in Australian children with Prader-Willi syndrome following initiation of growth hormone therapy

        In children with Prader-Willi syndrome (PWS), growth hormone (GH) improves height and body composition; however, may be associated with worsening sleep-disordered breathing (SDB). Some studies have reported less SDB after GH initiation, but follow-up with polysomnography is still advised in most clinical guidelines. ...

        Research

        How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: “There's a Lot More to My Child Than That She Can't Wash or Dress Herself.”

        The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers. ...

        Research

        Experience of gastrostomy using a quality care framework: The example of rett syndrome

        Gastrostomy assisted the management of feeding difficulties and poor weight gain, and was acceptable to families ...

        Research

        The trajectories of sleep disturbances in Rett syndrome

        This paper demonstrated that the evolution of sleep problems differed between subgroups of girls and women with Rett syndrome, in part explained by age and... ...

        Research

        Content Validation of Clinician-Reported Items for a Severity Measure for CDKL5 Deficiency Disorder

        CDKL5 deficiency disorder (CDD) results in early-onset seizures and severe developmental impairments. A CDD clinical severity assessment (CCSA) was previously developed with clinician and parent-report items to capture information on a range of domains. ...

        Research

        LIFECYCLE - Early Life Stressors and LifeCycle Health

        Graham Rachel Hall Foong GL RF BAppSci PhD CRFS FANZSRS FThorSoc FERS BSc (hons), PhD, MBiostat Honorary Research Associate Senior Research Fellow 08 6319 1626 Rachel.Foong@telethonkids.org.au Honorary Research Associate Senior Research Fellow ...

        Research

        Evaluation Tools Developed for Rett Syndrome

        Rett syndrome (RTT) is a complex neurodevelopmental X-linked disorder associated with severe functional impairments and multiple comorbidities. There is wide variation in the clinical presentation, and because of its unique characteristics, several evaluation tools of clinical severity, behavior, and functional motor abilities have been proposed specifically for it. ...

        Research

        Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives

        By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway. ...

        Research

        The Prevalence of Stimulant and Antidepressant Use by Australian Children and Adolescents

        A minority of 4- to 17-year-olds with ADHD and major depressive disorder were being treated with stimulant or antidepressant medication ...

        Research

        The Rett Syndrome Gross Motor Scale–Dutch Version (RSGMS-NL) Can Reliably Assess Gross Motor Skills in Dutch Individuals with Rett Syndrome

        The Rett Syndrome Gross Motor Scale (RSGMS) is an observational measurement, assessing gross motor skills in individuals with Rett syndrome. A Dutch version is lacking. The current study aims to translate and cross-culturally adapt the original RSMGS to Dutch and assess its inter-rater and intra-rater reliability. ...

        Research

        Working Towards a Better Understanding of ARF

        Jonathan Michael Tobias Carapetis AM Serralha Kollmann JR MS TK AM MBBS FRACP FAFPHM PhD FAHMS PhD, M.D., SFUW Executive Director; Head, Strep A Translation; Co-Founder of REACH Research Assistant Honorary Research Associate 08 6319 1000 08 6319 ...

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