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        News & Events

        New collaboration to boost kids early childhood development outcomes across Australia

        A new collaboration has been launched to fast track research into action to improve outcomes in the crucial early years of child development and learning. ...

        News & Events

        Giving wings to a generation of Indigenous leaders

        In 2005, the Telethon Kids Institute won a National Health & Medical Research Council Indigenous Capacity Building Grant. ...

        Research

        Effects of ganaxolone on non-seizure outcomes in CDKL5 Deficiency Disorder: Double-blind placebo-controlled randomized trial

        CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy. Ganaxolone, a neuroactive steroid, reduces the frequency of major motor seizures in children with CDD. This analysis explored the effect of ganaxolone on non-seizure outcomes.  ...

        News & Events

        Tips for discussing coronavirus with your kids

        The rapidly developing coronavirus crisis is affecting our daily lives in unprecedented ways and brings with it uncertainty and fear. ...

        Research

        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.   ...

        Perth – Integrated Developmental Paediatric Care within an Aboriginal Primary Health Care Service

        Derbarl Yerrigan Health Service (DYHS) has developed a holistic paediatric service unit anchored in primary health care and underpinned by care coordination provided by an experienced nurse and multi-disciplinary team. ...

        Research

        What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy

        There are limited psychometric data on outcome measures for children with Developmental Epileptic Encephalopathies (DEEs), beyond measuring seizures, and no data to describe meaningful change. This study aimed to explore parent perceptions of important differences in functional abilities that would guide their participation in clinical trials. ...

        Research

        FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies

        Developmental and epileptic encephalopathies (DEE) are rare, often monogenic neurodevelopmental conditions. Most affected individuals have refractory seizures. All have multiple severe impairments which can be as life-limiting as or more limiting than the seizures themselves. Mechanism- and gene-targeted therapies for these individually rare, genetic conditions hold hope for treatment, amelioration of disease expression, and even cure.  ...

        Research

        Standardization of Spirometry 2019 Update. An Official American Thoracic Society and European Respiratory Society Technical Statement

        Standards and consensus recommendations are presented for manufacturers, clinicians, operators, and researchers ...

        Research

        Unraveling the Optimum Latent Structure of Attention-Deficit/Hyperactivity Disorder: Evidence Supporting ICD and HiTOP Frameworks

        Attention Deficit/hyperactivity disorder (ADHD) is conceptualized differently in the Diagnostic and Statistical Manual (DSM-5), the International Classification of Diseases-10 (ICD-10), and the Hierarchical Taxonomy of Psychopathology (HiTOP) frameworks. This study applied independent cluster confirmatory factor analysis (ICM-CFA), exploratory structure equation model with target rotation (ESEM), and the S-1 bi-factor CFA approaches to evaluate seven ADHD models yielded by different combinations of these taxonomic frameworks. ...

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