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        Research

        Clinical and biological progress over 50 years in Rett syndrome

        Review of the clinical and biological progress over 50 years in Rett Syndrome ...

        Research

        Patterns, trends, and factors influencing hospitalizations for craniosynostosis in Western Australia. A population-based study

        Understanding hospital service use among children with a diagnosis of craniosynostosis is important to improve services and outcomes. This study aimed to describe population-level trends, patterns, and factors influencing hospitalizations for craniosynostosis in Western Australia. ...

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        IASSIDD 15th World Congress

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

        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

        Siblings of children with disabilities: challenges and opportunities

        Siblings of children with disabilities: challenges and opportunities ...

        Research

        Epidemiology of Rare Craniofacial Anomalies: Retrospective Western Australian Population Data Linkage Study

        We aimed to describe birth prevalence of rare craniofacial anomalies and associations with antenatal and perinatal factors. All live and stillbirths in Western Australia between 1980 and 2010 were identified from the Western Australian Birth Registrations and the Midwives Notification System (also provides information on antenatal and perinatal factors). ...

        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

        Epidemiology of Hospital Admissions for Craniosynostosis in Australia: A Population-Based Study

        To describe trends, age, and sex-specific patterns of population hospital admissions with a diagnosis of craniosynostosis (CS) in Australia. Population data for hospital separations (in-patient) from public and private hospitals (July 1996-June 2018) were obtained from the publicly available Australian Institute of Health and Welfare (AIHW) National Hospital Morbidity Database. ...

        Research

        Description of Total Population Hospital Admissions for Treacher Collins Syndrome in Australia

        To describe patterns and demographic characteristics of total-population hospital admissions with a diagnosis of Treacher Collins syndrome (TCS) in Australia. ...

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