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Research

There is increasing global support from governments and other funding bodies for community involvement in research, alongside a scientific and moral imperative for responsible and ethical research practice. Ninety per cent of Australian patient-led organisations in rare diseases have clearly articulated research priorities, indicating a desire among people affected by disease to be involved in research that impacts their communities. 

Research

To evaluate the associations between complex hip surgery and subsequent hospitalizations in children with intellectual disability, including a subset of children with cerebral palsy.

Research

Information 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.

Research

Recent interest in the diverse ecosystem of bacteria, fungi, parasites, and viruses that make up the skin microbiome has led to several studies investigating the microbiome in healthy skin and in a variety of dermatological conditions. 

Research

Rett syndrome (RTT) is a severe neurodevelopmental disorder affecting predominantly females and associated with variants in the MECP2 gene. Recent success in clinical trials have resulted in an expanded use of the Rett Syndrome Behaviour Questionnaire (RSBQ) for clinical and research purposes.

Research

o map subnational and local prevalence of drug-resistant tuberculosis (DR-TB) across Africa. We assembled a geolocated dataset from 173 sources across 31 African countries, comprising drug susceptibility test results and covariate data from publicly available databases. We used Bayesian model-based geostatistical framework with multivariate Bayesian logistic regression model to estimate DR-TB prevalence at lower administrative levels.

Research

Personal protective equipment is essential to protect healthcare workers when exposed to aerosol-generating procedures in patients with airborne respiratory pathogens.

Research

Promoting wellbeing for youth is a global health priority and young people with chronic conditions demonstrate disproportionately low wellbeing compared to their peers. However, wellbeing is variably defined, and little is understood as to what wellbeing means for this population. The aim of this study was to develop a conceptualisation of wellbeing that is rooted in the perspectives of young people with chronic conditions. 

Research

Although most people born this century will be educated in African schools, these schools often lack basic infrastructure, such as electricity and/or lighting. In the face of a rapidly growing school-age population in Africa, the electrification of educational facilities is not just an infrastructural challenge but also a pivotal investment in the continent’s future workforce.

Research

Health system and environmental factors play a significant role in achieving the World Health Organization End Tuberculosis (TB) targets. However, quantitative measures are scarce or non-existent at a global level. We aimed to measure the progress made towards meeting the global End TB milestones from 2015 to 2020 and identify health system and environmental factors contributing to the success.