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The natural history of the MECP2 Duplication disorder: Australian surveillance and plans for development of an international register

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763

Development and application of a scoring and visualization approach for 24-hour movement behaviours: an example based on social-emotional development in early years children

Current methods for assessing the healthfulness of 24-hour movement behaviours (sleep, sedentary time, light physical activity, moderate-to-vigorous physical activity) use binary classifications that fail to capture their continuous and compositional nature. This study introduces a percentile-based scoring and visualization approach to evaluate the healthfulness of movement behaviour time-use compositions, using social-emotional development in early childhood as an example.

Implementing Cultural Safety in Research Methodology: The Co-Design Process of a Brief Therapeutic Intervention for Aboriginal and Torres Strait Islander Young People Who Engage in Self-Harm

Aboriginal and Torres Strait Islander Peoples share rich cultural traditions unrivalled across the world; however, the continued impact of colonisation led to sustained, profound trauma that has spanned generations. With Aboriginal and Torres Strait Islander people presenting to hospital emergency departments for self-harm and suicidal behaviours at a rate 2.9 times higher than non-Indigenous people, there is a need to develop culturally appropriate interventions to address this growing problem.

Commitments to Improve Food Environments in Western Australia: A Review of Local Government Public Health Plans

Food environments are significant drivers of obesity and diet-related diseases, making them key targets for interventions that support healthier food choices. The role of Local Government Authorities is pivotal in shaping community food environments. 

Alcohol Advertising at the Beach: Insights From Young People in Western Australia

Advertising and marketing by the alcohol industry serve to normalise alcohol use, with exposure to alcohol advertising linked to earlier and riskier drinking among young people. Advertising that portrays alcohol use in and around waterways is of particular concern, with one in five fatal drownings being associated with alcohol.

Hot weather, maternal health, and pregnancy experiences, impacts and responses: A systematic review of global qualitative research

Extreme heat exposure is a major global public health threat that is affecting people across the life course, including the pregnancy period. Studies have linked extreme heat with adverse pregnancy and newborn health outcomes globally.

Total Pancreatectomy and Islet Auto Transplantation in South Australia: A Preliminary Evaluation of a 10-Year Experience

Hereditary pancreatitis causes severe early-onset pain and hospitalisation. In 15 Australian patients undergoing total pancreatectomy and islet auto transplantation (TPIAT), we observed a marked reduction in hospital admissions, inpatient days and emergency visits, complete analgesic cessation by 24 months and durable insulin independence in nearly half of the patients. These findings highlight TPIAT's potential to improve quality of life and reduce healthcare burden. Our programme aims to build evidence to support public funding and ensure equitable access to this procedure.

Protocol for a feasibility and acceptability trial of Bloom, a co-produced and co-facilitated parent group to enhance the quality of life and well-being of young autistic children

The autistic and autism communities have identified improving the quality of life and well-being of autistic people as a key priority. Despite this, to date, there are no evidence-based supports for autistic children which specifically focus on improvements in these areas.

A pilot implementation study of a chronic pain core outcome set and decision tree for children and young people with cerebral palsy

This study aimed to (i) develop a decision tree to guide clinicians to use a core outcome set (COS) of chronic pain assessment tools specific to children and young people with cerebral palsy and (ii) pilot test the implementation of the decision tree and core set in clinical practice.

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The latest publications and resources from the END RHD CRE Team