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Barriers and Considerations for Diagnosing Rare Diseases in Indigenous PopulationsAdvances 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.
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“Our culture, how it is to be us” — Listening to Aboriginal women about on Country urban birthingThe Birthing on Noongar Boodjar project Aboriginal women's data represents four generations of women's stories, experiences and expressions of childbearing
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Excess stroke incidence in young Aboriginal people in South Australia: Pooled results from two population-based studiesThe excess stroke incidence in Aboriginal South Australians appears substantial, especially in those aged <55 years
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Prevalence and profile of Neurodevelopment and Fetal Alcohol Spectrum Disorder (FASD) amongst Australian Aboriginal children living in remote communitiesEarly intervention services are needed to support developmentally vulnerable children in remote communities.
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Humility, inquisitiveness, and openness: key attributes for meaningful engagement with Nyoongar peopleThe rebuilding of trust requires the development of meaningful relationships in order to break down the barriers so as to increase access and develop culturally secure responses by services
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Improving access to primary care for Aboriginal babies in Western Australia: Study protocol for a randomized controlled trialA population-based, stepped wedge, cluster randomized controlled trial of an enhanced model of early infant primary care
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Comparing risks of cerebral palsy in births between Australian Indigenous and non-Indigenous mothersIndigenous infants have a higher risk of CP than non-Indigenous infants, especially postneonatal CP.
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Trends in maternal and newborn health characteristics and obstetric interventions among Aboriginal and Torres Strait Islander mothersTrends in maternal demographic characteristics, pre-existing medical conditions, pregnancy complications and neonatal characteristics were examined.
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Disparity in Mortality From Rheumatic Heart Disease in Indigenous AustraliansThis study was undertaken to provide a comprehensive examination of rheumatic heart disease mortality rates and trends in Indigenous Australians.
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What we know about suicide prevention for Aboriginal and Torres Strait Islander peoplesThis fact sheet addresses what we currently know about suicide prevention for Aboriginal and Torres Strait Islander peoples.