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Showing results for "clinical trials"

New research prepares for COVID-19 vaccine roll-out

As the world waits for a COVID-19 vaccine Perth researchers are getting one step ahead – embarking on a new study designed to prepare parents and government for a potential Australia-wide vaccination program.

World-first nasal spray whooping cough vaccine aims to protect young bubs

Tiny babies could soon have much-needed protection from community transmission of potentially deadly whooping cough thanks to a world-first nasal spray vaccine being trialed at The Kids Research Institute Australia.

Meaningful and minimally distressing: Trans adolescents’ perspectives on sensitive research interviews

Qualitative research on sensitive topics (e.g. abuse, mental health difficulties, discrimination) is needed to understand lived experiences of complex issues. However, this type of research raises concerns about potential adverse effects on participants, especially with younger participants and those from marginalized populations. In this study, we conducted a reflexive thematic analysis of 20 trans adolescents’ (14–18 years of age) experiences of participating in research about their stigma experiences.

What goes up must come down: dynamics of type 1 interferon signaling across the lifespan

Type 1 interferons (T1IFNs) are typically expressed in low concentrations under homeostatic conditions, but upon pathogenic insult or perturbation of the pathway, these critical immune signaling molecules can become either protectors from or drivers of pathology. While essential for initiating antiviral defense and modulating inflammation, dysregulation of T1IFN signaling can contribute to immunopathology, making it and its associated pathways prime targets for immune evasion and disruption by pathogens. 

Understanding parents' perspectives of repeated blinded continuous glucose monitoring in children with early-stage type 1 diabetes and an affected first-degree relative

To explore the lived experiences of parents of children at risk of type 1 diabetes undergoing repeated blinded continuous glucose monitoring. Since 2021, children with persistent islet autoimmunity in the Environmental Determinants of Islet Autoimmunity study have been invited to participate in a sub-study involving blinded Dexcom G6 CGM.

Effectiveness and Cost-Effectiveness of Models of Healthcare for People With Intellectual Disability in Australia: A Scoping Review

People with intellectual disability experience significant gaps in healthcare delivery resulting in poor health outcomes. Appropriately designed healthcare is required to meet the needs of this population and achieve better health outcomes. Little is known about the structure of healthcare delivery for people with intellectual disability and whether it is effective or cost-effective.

The parent empowerment scale: development and psychometric properties

Parents of trans and gender diverse (herein ‘trans’) children experience additional challenges in their parenting role relative to parents of cisgender children. Understanding and enhancing parents’ empowerment is a promising approach to support both parents and children. We aimed to develop an empowerment scale specific to parents of trans children, grounded in parents’ lived experiences. 

Parental experiences of using continuous glucose monitoring in their young children with early-stage type 1 diabetes: a qualitative interview study

To explore parents' experiences of using continuous glucose monitoring in their young children with early-stage type 1 diabetes, being followed in the Australian Environmental Determinants of Islet Autoimmunity (ENDIA) study.

Burden of illness in Rett syndrome: initial evaluation of a disorder-specific caregiver survey

Rett syndrome (RTT) is a severe X-linked neurodevelopmental disorder associated with multiple neurologic impairments. Previous studies have shown challenges to the quality of life of individuals with RTT and their caregivers. However, instruments applied to quantify disease burden have not adequately captured the impact of these impairments on affected individuals and their families. Consequently, an international collaboration of stakeholders aimed at evaluating Burden of Illness in RTT was organized.

Rett Syndrome Behaviour Questionnaire in Children and Adults With Rett Syndrome: Psychometric Characterization and Revised Factor Structure

Rett syndrome (RTT) is a severe neurodevelopmental disorder associated with multiple neurobehavioral abnormalities. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed for pediatric RTT observational studies. Because its application has expanded to adult and interventional studies, we evaluated the RSBQ's psychometric properties in six pediatric (n = 323) and five adult (n = 309) datasets.