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Research
What is it like living with X-linked hypophosphatemia?: results from an Australian consumer surveyX-linked hypophosphatemia (XLH) is a rare, X-linked dominant condition with a high burden of both physical and psychosocial disease. This study aimed to describe the experience and burden of disease for children and adults living with XLH in Australia by inviting affected individuals and their carers to complete an online questionnaire. Of the 46 responses, half were completed by a person with XLH, and half by carers. Thirty percent were male, 33% were aged less than 18 yr.
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Disparities in Diabetes Technology Uptake in Youth and Young Adults With Type 1 Diabetes: A Global PerspectiveGlobally, nearly 9 million people are living with type 1 diabetes (T1D). Although the incidence of T1D is not affected by socioeconomic status, the development of complications and limited access to modern therapy is overrepresented in vulnerable populations. Diabetes technology, specifically continuous glucose monitoring and automated insulin delivery systems, are considered the gold standard for management of T1D, yet access to these technologies varies widely across countries and regions, and varies widely even within high-income countries.
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Real-world glycaemic outcomes in children and young people on advanced hybrid closed-loop therapy: A population-based study in Western AustraliaTo evaluate real-world glycaemic outcomes in children with type 1 diabetes commencing advanced hybrid closed loop therapy and to explore these outcomes based on the cohort's clinical and socioeconomic characteristics.
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Short-Term Diabetic Retinopathy Status in People with Type 1 Diabetes Commencing Automated Insulin DeliveryRapid improvements in glucose control may lead to early worsening of diabetic retinopathy (EWDR). There is a need to demonstrate safety in people commencing automated insulin delivery (AID) due to the known efficacy in rapid glycemic improvement. We aimed to investigate short-term DR outcomes in people (aged ≥13 years) with type 1 diabetes after initiation of AID (use ≥6 months).
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X-Linked Hypophosphataemia and Burosumab: A Systemic Disease With a New TreatmentX linked hypophosphataemia (XLH) is a systemic, chronic condition that significantly impairs quality of life. In XLH, a phosphate regulating endopeptidase homologue X-linked (PHEX) gene mutation leads to excess fibroblast growth factor 23 (FGF23), causing hypophosphataemia and subsequent rickets, lower limb deformity, pain and other sequelae, however there are likely other non-FGF23 mediated mechanisms contributing to disease
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The usability and feasibility of a self-compassion chatbot (COMPASS) for youth living with type 1 diabetesAlthough it is well established that youth with type 1 Diabetes (T1D) experience high rates of distress, current clinical care is often under-resourced and unable to provide sufficient or timely psychological support. The current study was designed to evaluate the safety, usability and feasibility of 'COMPASS,' a self-compassion chatbot intervention.
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Plastics in human diets: development and evaluation of the 24-h Dietary Recall — Plastic Exposure and the Dietary Plastics ScoreHumans are commonly exposed to plastic through their dietary intake and food consumption patterns. Plastic-associated chemicals (PAC), such as bisphenols and phthalates, are recognized as endocrine-disrupting and are associated with increased risk of cardiovascular disease and metabolic syndrome. However, accurate methods to assess dietary exposure to plastic products and PAC are inadequate, limiting interrogation of health impacts.
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Codesigning enhanced models of care for Northern Australian Aboriginal and Torres Strait Islander youth with type 2 diabetes: study protocolPremature onset of type 2 diabetes and excess mortality are critical issues internationally, particularly in Indigenous populations. There is an urgent need for developmentally appropriate and culturally safe models of care. We describe the methods for the codesign, implementation and evaluation of enhanced models of care with Aboriginal and Torres Strait Islander youth living with type 2 diabetes across Northern Australia.
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Priority setting for children and young people with chronic conditions and disabilitiesThe aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them.
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Two decades of increasing incidence of childhood-onset type 2 diabetes in Western Australia (2000–2019)This retrospective population‐based study aimed to determine the incidence of type 2 diabetes from 2012 to 2019 in Western Australian youth aged under 16 years, and to examine temporal trends between 2000 and 2019, using data from the Western Australian Children’s Diabetes Database (WACDD). The data extracted for eligible patients diagnosed with type 2 diabetes, according to standard criteria, included diagnosis year, age, sex and self‐reported Aboriginal or Torres Strait Islander status.