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Research

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.

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Predicting Long-Term Survival Without Major Disability for Infants Born Preterm

Apgar score, birth weight, sex, socioeconomic status, and maternal ethnicity, in addition to gestational age, have pronounced impacts on disability-free survival.

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A Novel Missense Mutation Affecting the N-terminal Domain of SAP Protein in X-linked Lymphoproliferative Disease

We have revealed a novel SH2D1A gene mutation in a patient with XLP resulting in fulminant refractory EBV-driven HLH, which is a recognized severe complication

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Standardization of Spirometry 2019 Update. An Official American Thoracic Society and European Respiratory Society Technical Statement

Standards and consensus recommendations are presented for manufacturers, clinicians, operators, and researchers

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The impact of pre-pregnancy body mass index and gestational weight gain on placental abruption risk: a systematic review and meta-analysis

Mothers that are underweight prior to or in early pregnancy are at a moderately increased risk of placental abruption

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Inflammatory bowel diseases: interrelationships between dietary vitamin D, exposure to UV radiation and the fecal microbiome

This review explores the interaction of vitamin D, and ultraviolet radiation, with the intestinal innate and adaptive immune systems

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Diagnosis, Genetics, and Therapy of Short Stature in Children: A Growth Hormone Research Society International Perspective

The Growth Hormone Research Society (GRS) convened a Workshop in March 2019 to evaluate the diagnosis and therapy of short stature in children

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Use of remote monitoring with continuous glucose monitoring in young children with Type 1 diabetes: the parents’ perspective

Parents of primary school children reported that using remote monitoring and continuous glucose monitoring was a mostly beneficial experience

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Allograft outcome following repeat transplantation of patients with non-adherence-related first kidney allograft failure: a population cohort study

The associations between causes of first allograft failure and acute rejection-related and non-adherence-related allograft failure following re-transplantation

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Nasal Cytokine Profiles of Patients Hospitalised with Respiratory Wheeze Associated with Rhinovirus C

Medically attended RV-C-induced wheeze is characterised by a Th2 inflammatory pattern, independent of viral load