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A process and impact evaluation of use of a Powered Wheelchair Standing Device by boys with Duchenne muscular dystrophyGraham Jenny Peter Hall Downs Jacoby BAppSci PhD CRFS FANZSRS FThorSoc FERS BApplSci (physio) MSc PhD BA (Hons) MSc Honorary Research Associate Head,
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Multi-site validation of a suite of clinical outcome measures for clinical trial readiness in the CDKL5 Deficiency DisorderHelen Jenny Peter Leonard Downs Jacoby MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc Principal Research Fellow Head, Child Disability
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Raine Study - Senses Special Interest GroupChris Andrew Monique Sarra Videos Brennan-Jones Whitehouse Watch and listen to Andrew Robinson Jamieson PhD PhD PhD MPsych (Clin) MAPS BSc (Hons) MSc
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Potassium Ion Channels in Malignant Central Nervous System CancersMalignant central nervous system (CNS) cancers are among the most difficult to treat, with low rates of survival and a high likelihood of recurrence. This is primarily due to their location within the CNS, hindering adequate drug delivery and tumour access via surgery. Furthermore, CNS cancer cells are highly plastic, an adaptive property that enables them to bypass targeted treatment strategies and develop drug resistance.
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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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Growth patterns in individuals with CDKL5 deficiency disorderAim: To compare growth in individuals with cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder with population norms and to investigate the effect of gastrostomy on growth.
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Parents on the Concept of Physical Literacy: What Do They Know, What Do They Do, and What Do They Want?Physical literacy development in early childhood, viewed by many as the foundation for lifelong physical activity engagement, is significantly influenced by parents. Our aim was to explore parents' understanding of physical literacy and gain insight into their perspectives on physical literacy promotion.
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Psychological Flow Scale (PFS): Development and Preliminary Validation of a New Flow Instrument that Measures the Core Experience of Flow to Reflect Recent Conceptual AdvancementsIn this study, we sought to develop—and provide preliminary validity evidence for scores derived from—a new Psychological Flow Scale (PFS). We propose a parsimonious model of three core dimensions of flow, reflecting the findings from a recent scoping review that synthesised flow research across scientific disciplines.
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Excess Deaths Associated with Rheumatic Heart Disease, Australia, 2013-2017During 2013–2017, the mortality rate ratio for rheumatic heart disease among Indigenous versus non-Indigenous persons in Australia was 15.9, reflecting health inequity. Using excess mortality methods, we found that deaths associated with rheumatic heart disease among Indigenous Australians were probably substantially undercounted, affecting accuracy of calculations based solely on Australian Bureau of Statistics data.
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A Review of Cardiac Surgical Procedures and Their Outcomes for Paediatric Rheumatic Heart Disease in Western AustraliaSurgical intervention is an important treatment modality for advanced rheumatic heart disease (RHD). This study aimed to describe patient characteristics and outcomes from cardiac surgery for RHD in patients referred to the only tertiary paediatric hospital in Western Australia.