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The perceived effects of cannabis products in the management of seizures in CDKL5 Deficiency DisorderCDKL5 Deficiency Disorder (CDD) is a severe treatment-resistant form of early-onset epilepsy. Current treatment options are often ineffective and associated with adverse effects, forcing families to seek alternative therapies for their children including products derived from cannabis. Reportsof miraculous cures and a public preferencefor 'natural' therapies have resulted in considerable public interest, and so this study aimed to characterize the use of cannabis in these individuals, as well as compare caregiver perceptions of efficacy and safety to objective evidence of seizure control and number of antiepileptic drugs used.
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The Collaboration for Increasing Influenza Vaccination in Children (CIIVIC): a meeting reportThe burden of seasonal influenza disease in Australian children is substantial, especially for those with medical comorbidities including chronic cardiac, respiratory, neurological and immunosuppressive conditions. Influenza is more likely to be severe in children with comorbidities compared to previously healthy children (e.g. more frequent and longer hospitalisation, more frequent intensive care unit admission and requiring respiratory support). Direct protection against influenza by vaccination is critical for children with comorbidities and remains the most effective tool for influenza prevention.
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Coronavax: preparing community and government for COVID-19 vaccination: a research protocol for a mixed methods social research projectAhead of the implementation of a COVID-19 vaccination programme, the interdisciplinary Coronavax research team developed a multicomponent mixed methods project to support successful roll-out of the COVID-19 vaccine in Western Australia. This project seeks to analyse community attitudes about COVID-19 vaccination, vaccine access and information needs. We also study how government incorporates research findings into the vaccination programme.
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Less Nocturnal Hypoglycemia but Equivalent Time in Range among Adults with Type 1 Diabetes Using Insulin Pumps Versus Multiple Daily InjectionsThis prerandomization analysis from the Australian HCL-Adult trial (registration number: ACTRN12617000520336) compared masked continuous glucose monitoring (CGM) metrics among adults using insulin pumps versus multiple daily injections (MDIs), who were all self-monitoring blood glucose (SMBG).
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Formative evaluation of a community-based approach to reduce the incidence of Strep A infections and acute rheumatic feverWe explore the acceptability of a novel, outreached-based approach to improve primary and primordial prevention of Strep A skin sores, sore throats and acute rheumatic fever in remote Aboriginal communities. A comprehensive prevention program delivered by trained Aboriginal Community Workers was evaluated using approximately fortnightly household surveys about health and housing and clinical records.
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Barriers and enablers to promoting grandchildren’s physical activity and reducing screen time: a qualitative study with Australian grandparentsWith an increasing number of grandparents providing care to their grandchildren, calls have been made for these caregivers to be considered important stakeholders in encouraging children's engagement in health-promoting behaviors, such as physical activity.
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Identifying SETBP1 haploinsufficiency molecular pathways to improve patient diagnosis using induced pluripotent stem cells and neural disease modellingSETBP1 Haploinsufficiency Disorder (SETBD) is characterised by mild to moderate intellectual disability, speech and language impairment, mild motor developmental delay, behavioural issues, hypotonia, mild facial dysmorphisms, and vision impairment. Despite a clear link between SETBP1 mutations and neurodevelopmental disorders the precise role of SETBP1 in neural development remains elusive.
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Management of patients with diffuse intrinsic pontine glioma in Australia and New Zealand: Australian and New Zealand Children's Haematology/Oncology Group position statementThe main mission of the Australian and New Zealand Children's Haematology and Oncology Group is to develop and facilitate local access to the world's leading evidence-based clinical trials for all paediatric cancers, including brain tumours, as soon as practically possible.
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Investigating Parental Observations of Early Autism Development in Simplex and Multiplex FamiliesPast research has highlighted the importance of early identification of developmental differences to improve targeted access to early interventions or supports. As such, it is of particular importance in the context of children at elevated likelihood of autism (such as where an older sibling has a diagnosis of autism), to better understand when and which early concerns are important as predictors of which children will benefit from pre-diagnostic supports.
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Characterization of invasive Group B Streptococcus isolates from Western Australian infants, 2004-2020Invasive Group B Streptococcus remains a leading cause of infant morbidity and mortality. Intrapartum antibiotic prophylaxis has been implemented in many countries with a reduction in early-onset disease, but an effective vaccine may further reduce the disease burden. Candidate vaccines targeting capsular polysaccharides and surface proteins are now in clinical trials.