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        News & Events

        New team members!

        CliniKids recently welcomed Gayle, Tarryn and Emma to the clinical team. The clinicians will be located out our new Joondalup clinic, which will be welcoming families in Term 4.  ...

        Research

        Wellbeing and distress in young people with chronic conditions: how do positive psychology variables relate to mental health outcomes?

        The aim of this study was to determine the unique and shared contributions of various positive psychology constructs (gratitude, optimism, hope, self-compassion, self-efficacy, and emotion regulation) to wellbeing and distress outcomes in young people living with a diverse range of chronic health conditions.  ...

        Research

        Does gastrostomy improve the lives of children with severe disability and their families?

        Emma Helen Jenny Peter Glasson Leonard Downs Jacoby EJ HM JA PJ BPsych BSc (Hons) PhD MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc Senior ...

        Research

        Towards evidence based care for Rett syndrome: a research model to inform management of rare disorders

        Helen Jenny Leonard Downs HM JA MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Program Head, Development and Disability +61 419 956 ...

        Research

        Evolving Trends of Gastrostomy Insertion Within a Pediatric Population

        New gastrostomy insertion among children who require long-term enteral feeding support increased over the study period ...

        Research

        Longitudinal bone mineral content and density in Rett syndrome and their contributing factors

        Bone mass and density are low in females with Rett syndrome. ...

        Research

        Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study

        CDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials.  ...

        Research

        The development, content and response process validation of a caregiver-reported severity measure for CDKL5 deficiency disorder

        CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity.  ...

        Research

        The contributions of fetal growth restriction and gestational age to developmental outcomes at 12 months of age: A cohort study

        Developmental assessment of infants with fetal growth restriction was mostly comparable to those born without fetal growth restriction at 12 months ...

        Research

        A validation study of a modified Bouchard activity record that extends the concept of 'uptime' to Rett syndrome

        The aim of this study was to investigate the validity of using a Bouchard activity record (BAR) in individuals with Rett syndrome to measure physical... ...

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