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Barriers and Considerations for Diagnosing Rare Diseases in Indigenous Populations

Advances in omics and specifically genomic technologies are increasingly transforming rare disease diagnosis. However, the benefits of these advances are disproportionately experienced within and between populations, with Indigenous populations frequently experiencing diagnostic and therapeutic inequities. The International Rare Disease Research Consortium (IRDiRC) multi-stakeholder partnership has been advancing toward the vision of all people living with a rare disease receiving an accurate diagnosis, care, and available therapy within 1 year of coming to medical attention. In order to further progress toward this vision, IRDiRC has created a taskforce to explore the access barriers to diagnosis of rare genetic diseases faced by Indigenous peoples, with a view of developing recommendations to overcome them.

A collaborative approach towards prevention of otitis media in Aboriginal children

Otitis media is very common in Aboriginal children in Western Australia and chronic ear disease causes major problems in speech and language development and education. Up until recently, most programmes dealing with the problem of OM have focused on clinical interventions rather than prevention. The Enhanced Prevention Working Group was established as part of the WA Child Ear Health Strategy (2017–2021). The Group has worked collaboratively to develop a set of recommendations for prevention of OM in Aboriginal children.

Antimicrobial stewardship in remote primary healthcare across northern Australia

The high burden of infectious disease and associated antimicrobial use likely contribute to the emergence of antimicrobial resistance in remote Australian Aboriginal communities. We aimed to develop and apply context-specific tools to audit antimicrobial use in the remote primary healthcare setting.

Identifying young Aboriginal and Torres Strait Islander children in linked administrative data: A comparison of methods

In the ongoing debate on optimum methods for identification of Indigenous people within linked administrative data, few studies have examined the impacts of method on population counts and outcomes in family-based linkage studies of Aboriginal children.

Differences in stroke risk and cardiovascular mortality for Aboriginal and other Australian patients with atrial fibrillation

Stroke risk and cardiovascular mortality are markedly higher for Aboriginal than non-Aboriginal patients with atrial fibrillation, particularly for patients under 60

Modelling factors for Aboriginal and Torres Strait Islander child neurodevelopment outcomes: A latent class analysis

This study highlights a range of unique profiles that can be used for improving the early development of young Aboriginal children

Disparities between Aboriginal and non-Aboriginal perinatal mortality rates in Western Australia from 1980 to 2015

This study aimed to examine the pattern of stillbirth and neonatal mortality rate disparities over time in Western Australia

“Our culture, how it is to be us” — Listening to Aboriginal women about on Country urban birthing

The Birthing on Noongar Boodjar project Aboriginal women's data represents four generations of women's stories, experiences and expressions of childbearing

Trends in mental health related contacts among mothers of Aboriginal children in Western Australia (1990-2013)

Many of the mental health issues that women develop earlier in life are chronic at the time of conception, during pregnancy and at birth

Community-based participatory action research on rheumatic heart disease in an Australian Aboriginal homeland: Evaluation of the ‘On track watch’ project

Based in 'both-way learning', the aim of this study was to co-design, implement and evaluate community-based participatory action research to achieve this vision