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Research
The Lived Experience of Parents’ Receiving the Diagnosis of CDKL5 Deficiency Disorder for Their ChildCDKL5 deficiency disorder (CDD), a severe developmental and epileptic encephalopathy, is being diagnosed earlier with improved access to genetic testing, but this may also have unanticipated impacts on parents’ experience receiving the diagnosis. This study explores the lived experience of parents receiving a diagnosis of CDD for their child using mixed methods.
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The Challenges of Being Physically Active: A Qualitative Study of Young People With Type 1 Diabetes and Their ParentsBenefits of physical activity are well recognized for youth with type 1 diabetes mellitus (T1DM), but being active is challenging. In this study, we aimed to investigate the challenges experienced by adolescents, their parents and young adults with T1DM when they are physically active.
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Pediatric Airway Management in Times of COVID-19-a Review of the Evidence and ControversiesThis review summarizes and provides a comprehensive narrative synthesis of the current evidence on pediatric airway management during the COVID-19 pandemic.
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Protocol for the systematic review of the epidemiology of superficial Streptococcal A infections (skin and throat) in AustraliaWe have produced a protocol for the comprehensive systematic review of the current literature around superficial group A Streptococcal infections in Australia.
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Preventative therapeutic approaches for hypertrophic cardiomyopathySarcomeric gene mutations are associated with the development of hypertrophic cardiomyopathy (HCM). Current drug therapeutics for HCM patients are effective in relieving symptoms, but do not prevent or reverse disease progression. Moreover, due to heterogeneity in the clinical manifestations of the disease, patients experience variable outcomes in response to therapeutics.
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Use of parenteral nutrition in term and late preterm infants: An Australian and New Zealand SurveyThere is limited information regarding the use of parenteral nutrition (PN) in term and late preterm infants. We conducted a survey to study the current clinical practices within Australia and New Zealand (ANZ). A 15-question online-survey was distributed to 232 neonatologists and 55 paediatric intensivists across ANZ between September and November 2019.
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Opisthorchis viverrini and Strongyloides stercoralis mono- and co-infections: Bayesian geostatistical analysis in an endemic area, ThailandParasitic infections caused by Opisthorchis viverrini and Strongyloides stercoralis remain a major public health threat in the Greater Mekong Sub-region. An understanding of climate and other environmental influences on the geographical distribution and emergence of parasitic diseases is a crucial step to guide targeted control and prevention programs.
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Investigating differences in village-level heterogeneity of malaria infection and household risk factors in Papua New GuineaMalaria risk is highly heterogeneous. Understanding village and household-level spatial heterogeneity of malaria risk can support a transition to spatially targeted interventions for malaria elimination. This analysis uses data from cross-sectional prevalence surveys conducted in 2014 and 2016 in two villages (Megiar and Mirap) in Papua New Guinea.
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Decline in gross motor skills in adult Rett syndrome; results from a Danish longitudinal studyLongevity of individuals with neurodevelopmental diseases as Rett syndrome (RTT) has increased and many reach adulthood and old age. There is therefore a need to increase knowledge about the course of RTT in adults in order to improve medical care management and quality of life.
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Lessons learnt during the COVID-19 pandemic: Why Australian schools should be prioritised to stay openIn 2020, school and early childhood educational centre (ECEC) closures affected over 1.5 billion school-aged children globally as part of the COVID-19 pandemic response. Attendance at school and access to ECEC is critical to a child's learning, well-being and health. School closures increase inequities by disproportionately affecting vulnerable children. Here, we summarise the role of children and adolescents in Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) transmission and that of schools and ECECs in community transmission and describe the Australian experience.