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BEAT-CF (Bayesian Evidence Adaptive Treatment for people with Cystic Fibrosis): description of a prospective cohort for nested studies in cystic fibrosisDespite recent improvements in treatment modalities for cystic fibrosis (CF), there is currently limited evidence and a lack of consensus regarding optimal treatment strategies for the different aspects of CF, including pulmonary exacerbations (PEx). We aimed to establish a prospective cohort of people with CF (pwCF) to evaluate alternative approaches to managing CF in the era of modulator therapies.
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The parent empowerment scale: development and psychometric propertiesParents of trans and gender diverse (herein ‘trans’) children experience additional challenges in their parenting role relative to parents of cisgender children. Understanding and enhancing parents’ empowerment is a promising approach to support both parents and children. We aimed to develop an empowerment scale specific to parents of trans children, grounded in parents’ lived experiences.
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The perspectives of autistic adolescents and their parents on sleep strategies for insomniaAutistic adolescents are vulnerable to sleep difficulties, with up to 80 % experiencing sleep problems, most commonly insomnia. Little is known about how autistic adolescents are involved in their own sleep treatment, and their depth of knowledge about their sleep difficulties. The aims of this study were to investigate autistic adolescent and parent perspectives of experiencing and managing insomnia, and what factors influence the development of these perspectives on insomnia and treatment.
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Glycemic and Psychosocial Outcomes of Advanced Hybrid Closed-Loop Therapy in Youth With High HbA1c: A Randomized Clinical TrialTo determine the efficacy of advanced hybrid closed-loop therapy in a high-risk cohort of youth on continuous subcutaneous insulin infusion with or without continuous glucose monitoring with suboptimal glycemia.
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Spatial co-distribution of tuberculosis prevalence and low BCG vaccination coverage in EthiopiaWhile bacille-calmette-guerin (BCG) vaccination is one of the recommended strategies for preventing tuberculosis, its coverage is low in several countries, including Ethiopia. This study investigated the spatial co-distribution and drivers of TB prevalence and low BCG coverage in Ethiopia.
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Indigenous Australian perspectives on the perinatal period: Social well-being, culture and early infant attachmentsAlthough social factors and culture are significant determinants of health in Aboriginal and Torres Strait Islander peoples, little is known academically about key interpersonal and social experiences of this population during the perinatal period, or how early attachments are formed through culture. This study addressed this gap in the literature.
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Pushing the boundaries of rare disease diagnostics with the help of the first Undiagnosed HackathonTimo Lassmann BSc (Hons) MSc PhD Feilman Fellow; Head, Precision Health Research and Head, Computational Biology timo.lassmann@thekids.org.au
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Neurodivergence, intersectionality, and eating disorders: a lived experience-led narrative reviewAutistic people and those with attention deficit hyperactivity disorder are at a high risk of developing an eating disorder. While there is limited evidence on the relationship between other forms of neurodivergence and eating disorders, research suggests associations between giftedness, intellectual disability, obsessive-compulsive disorder, psychosis, Tourette's syndrome, and disordered eating.
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Global change, climate change, and asthma in children: Direct and indirect effects - A WAO Pediatric Asthma Committee ReportThe twenty-first century has seen a fundamental shift in disease epidemiology with anthropogenic environmental change emerging as the likely dominant factor affecting the distribution and severity of current and future human disease. This is especially true of allergic diseases and asthma with their intimate relationship with the natural environment.
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“Stop, pause and take a break”: a mixed methods study of the longer-term outcomes of digital emotional wellbeing training for perinatal womenMaternal psychological distress is related to poorer physical and mental health as well as child developmental problems. Interventions that optimise maternal mental health and wellbeing during the "first 1,000 days" of life should have wide-reaching benefits for the mother and her child.