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        Research

        Health care utilization and costs for children and adults with duchenne muscular dystrophy

        Annual economic cost of Duchenne Muscular Dystrophy was found to be high, reflecting a significant socioeconomic burden, especially in boys who reach adulthood ...

        Research

        The International Collaboration for Autism Registry Epidemiology (iCARE): Multinational Registry-Based Investigations of Autism Risk Factors and Trends

        iCARE provides a unique, unprecedented resource in autism research that will significantly enhance the ability to detect environmental and genetic... ...

        Research

        Employing cognitive interviewing to evaluate, improve and validate items for measuring the health-related quality of life of women diagnosed with ovarian cancer

        Use of patient-reported outcome measures in clinical settings facilitate the delivery of better health care to improve patient health outcomes. ...

        Research

        A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders

        Explored Youth with Neuromuscular Disorders perceptions of health, health behaviors and healthcare engagement ...

        Research

        Incidence and prevalence of falls in adults with intellectual disability living in the community: a systematic review protocol.

        Our objective is to synthesize the best available evidence to determine the incidence and prevalence of falls in intellectually disabled adults in the community ...

        Research

        Exploring enablers and barriers to accessing health services after a fall among people with intellectual disability

        There is an urgent need to develop high-quality falls prevention services for older adults with intellectual disability ...

        News & Events

        IASSIDD 15th World Congress

        Our AussieRett team recently visited Melbourne, Australia for the IASSIDD 15th World Congress. ...

        Research

        Enabling successful life engagement in young people with ADHD: new components beyond adult models of recovery

        To examine the lived experiences of young people successfully managing life with ADHD and investigate the applicability of adult models of Recovery to these individuals. ...

        Research

        Cannabis for refractory epilepsy in children: A review focusing on CDKL5 Deficiency Disorder

        This review provides the first comprehensive overview of the potential role for cannabis based preparations in the treatment of CDKL5 Deficiency Disorder ...

        Research

        Diagnosis of Autism Spectrum Disorder According to Maternal-Race Ethnicity and Country of Birth: A Register-Based Study

        An increased prevalence of autism spectrum disorder (ASD) among children of immigrant backgrounds has been observed ...

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