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Genetic analysis reveals range of Rett syndrome

The first comprehensive analysis of the clinical effects of genetic mutations involved in Rett syndrome

Research

A Family's Journey at JHC: Analyses of routinely collected data

Desiree Silva MBBS, FRACP, MPH, PhD Co-Director, ORIGINS desiree.silva@thekids.org.au Co-Head, The ORIGINS Project Professor Desiree Silva is

Research

ADAPTS: Antibiotic Dysbiosis And Probiotics Trial in infantS

Desiree Peter Silva Richmond MBBS, FRACP, MPH, PhD MBBS MRCP(UK) FRACP Co-Director, ORIGINS Head, Vaccine Trials Group desiree.silva@thekids.org.au

Game-changing program for kids with social and communication differences

A world-first program for babies with differences in their social and communication skills is aiming to help parents and caregivers better understand the different ways their child communicates.

More than a good night's sleep: why a preterm baby's body clock may unlock the secret to life-long health

A simple set of eye masks and ear plugs – an inexpensive solution explored in a successful pilot study by The Kids Research Institute Australia, together with the Child and Adolescent Health Service – could hold the key to better outcomes for our tiniest bubs. Now, a nationwide clinical trial is testing the idea

Research

Coping Compass: co-designing a brief online positive psychology programme for youth with chronic conditions

This article presents a case study of a 12-month co-design process with young people (16–25) living with chronic health conditions to create an online, self-guided intervention based on positive psychology. Following an established framework for co-designing with vulnerable consumers, the co-design process was designed with stakeholders to promote accessibility and maximise youth engagement in the design of the programme. 

Research

Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder

Valid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness.

Research

The feasibility of a digital health approach to facilitate remote dental screening among preschool children during COVID-19 and social restrictions

Tele-dentistry can be useful to facilitate screening of children, especially those living in rural and remote communities, and during the COVID-19 pandemic. This study evaluated the feasibility of tele-dental screening for the identification of early childhood caries (ECC) in preschoolers using an app operated by their parents with remote review by oral-health therapists.

Research

Employing cognitive interviewing to evaluate, improve and validate items for measuring the health-related quality of life of women diagnosed with ovarian cancer

Use of patient-reported outcome measures in clinical settings facilitate the delivery of better health care to improve patient health outcomes.