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Community Involvement Frameworks and Guidelines

The Rio Tinto Children’s Diabetes Centre is committed to increasing the community voice in diabetes research at all levels to ensure our research is

Talking about type 1 diabetes

A new research study conducted by Professor Jeneva Ohan and Dr Keely Bebbington aims to develop our understanding of how adolescents navigate these disclosure decisions, and how we can support them to feel more confident when talking to others about their diabetes.

Research

Ending rheumatic heart disease in Australia: the evidence for a new approach

The RHD Endgame Strategy: the blueprint to eliminate rheumatic heart disease in Australia by 2031 (the Endgame Strategy) is the blueprint to eliminate rheumatic heart disease (RHD) in Australia by 2031. Aboriginal and Torres Strait Islander people live with one of the highest per capita burdens of RHD in the world.

Research

Impact of Hybrid Closed Loop Therapy on Hypoglycemia Awareness in Individuals with Type 1 Diabetes and Impaired Hypoglycemia Awareness

This study evaluated the efficacy of using a hybrid closed loop system in restoring hypoglycemia awareness in individuals with impaired awareness of hypoglycemia. Participants with IAH (Gold score ≥4) were recruited into a randomized crossover pilot study.

Research

One vaccine for life: Lessons from immune ontogeny

There remains a general misconception that the immune status of the fetus and neonate is immature or insufficient. However, emerging research in immune ontogeny prompts reconsideration of this orthodoxy, reframing this period instead as one of unique opportunity. Vaccine responses (qualitative and quantitative) vary between individuals, and across demographic cohorts. Elements of baseline immune status and function predict vaccine response - some of these factors are well described, others remain a subject of ongoing research, especially with the rapidly expanding field of 'omics' research, enabled by development of highly granular immune profiling techniques and increasing computational capacity.

Research

Retinal differential light sensitivity variation across the macula in healthy subjects: Importance of cone separation and loci eccentricity

Microperimetry measures differential light sensitivity (DLS) at specific retinal locations. The aim of this study is to examine the variation in DLS across the macula and the contribution to this variation of cone distribution metrics and retinal eccentricity.

Research

Incidence of NUT carcinoma in Western Australia from 1989 to 2014: a review of pediatric and adolescent cases from Perth Children’s Hospital

NUT carcinoma (NC), previously known as NUT midline carcinoma, is a rare and very aggressive cancer that occurs in both children and adults. NC is largely chemoresistant, with an overall survival of less than 7 months. Because the carcinoma is not restricted to a particular organ, diagnosis is often a challenge. In the absence of a clearly determined incidence for NC, we sought to study the diagnosis of patients in a well-defined population.

Research

Perspectives of trans and gender diverse young people accessing primary care and gender-affirming medical services: Findings from Trans Pathways

Increasing numbers of trans young people are seeking medical services worldwide, but there have been few qualitative investigations of the experiences of trans young people attempting to engage with these services to explore in-depth experiences of clinical interactions.

Research

Sexual orientation and prevalence of mental health difficulties among emergency services employees

LGBQ+ people (Lesbian, Gay, Bisexual, Queer) are at-risk of discrimination and developing mental health issues within general populations. Limited research has assessed their mental health in emergency services occupations, a population which are known to experience poorer mental health. The current study explores the extent to which sexual orientation is associated with higher rates of mental health issues among emergency personnel.

Research

Ethics and equity in rare disease research and healthcare

Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing.