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The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping reviewSiblings of children with neurodevelopmental conditions have unique experiences and challenges related to their sibling role. Some develop mental health concerns as measured by self-reported surveys or parent report. Few data are available at the population level, owing to difficulties capturing wide-scale health data for siblings. Data linkage is a technique that can facilitate such research.
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Measuring the Burden of Epilepsy Hospitalizations in CDKL5 Deficiency DisorderInformation on the hospital service use among individuals with CDKL5 Deficiency Disorder, an ultrarare developmental epileptic encephalopathy, is limited, evidence of which could assist with service planning. Therefore, using baseline and longitudinal data on 379 genetically verified individuals in the International CDKL5 Disorder Database, we aimed to investigate rates of seizure-related and other hospitalizations and associated length of stay in this cohort.
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Associations between genotype, phenotype and behaviours measured by the Rett syndrome behaviour questionnaire in Rett syndromeRett syndrome (RTT) is a rare neurodevelopmental disorder with developmental impairments, comorbidities, and abnormal behaviours such as hand stereotypies and emotional features. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed to describe the behavioural and emotional features of RTT.
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An Overview of the Skin Microbiome, the Potential for Pathogen Shift, and Dysbiosis in Common Skin PathologiesRecent interest in the diverse ecosystem of bacteria, fungi, parasites, and viruses that make up the skin microbiome has led to several studies investigating the microbiome in healthy skin and in a variety of dermatological conditions.
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Developmental Relationship-Based Interventions for Autistic ChildrenAndrew Videos Whitehouse Watch and listen to Andrew PhD Deputy Director (Research); Angela Wright Bennett Professor of Autism Research at The Kids
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Caudal block, high flow oxygen insufflation and dexmedetomidine sedation for inguinal hernia surgery in infants—A prospective evaluation of an alternative anesthesia techniqueInguinal hernia repair is the most common operation in infants, with well recognized anesthetic and perioperative risks. The aim was to investigate if the combination of caudal block, high-flow nasal oxygen insufflation and intravenous dexmedetomidine sedation is suitable for infants undergoing inguinal hernia surgery.
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Phage therapy could be key to conquering persistent bacterial lung infections in childrenPersistent bacterial lung infections in children lead to significant morbidity and mortality due to antibiotic resistance. In this paper, we describe how phage therapy has shown remarkable efficacy in preclinical and clinical studies, demonstrating significant therapeutic benefits through various administration routes.
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Responsive service design and workforce strengthening: Recommendations to improve aged care for Aboriginal and Torres Strait Islander peoplesThis study aimed to develop innovative and practical strategies and recommendations for aged care policy and practice that support the needs of Aboriginal and Torres Strait Islander peoples.
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“I just don’t know enough”: Australian perspectives on community involvement in health and medical researchThere is increasing global support from governments and other funding bodies for community involvement in research, alongside a scientific and moral imperative for responsible and ethical research practice. Ninety per cent of Australian patient-led organisations in rare diseases have clearly articulated research priorities, indicating a desire among people affected by disease to be involved in research that impacts their communities.
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Hospitalizations Following Complex Hip Surgery in Children with Intellectual Disability: A Self-Controlled Case Series AnalysisTo evaluate the associations between complex hip surgery and subsequent hospitalizations in children with intellectual disability, including a subset of children with cerebral palsy.