A population-based, stepped wedge, cluster randomized controlled trial of an enhanced model of early infant primary care ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2016
• February 2016

Scoliosis is a common orthopaedic complication of Rett syndrome, and surgery is commonly used to reduce asymmetry in cases with severe scoliosis. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2009
• June 2009

Loss of hand function is a core feature of Rett syndrome. This article describes longitudinal hand function at 3 time points for 72 subjects participating... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2011
• March 2011

Modifications to diagnostic criteria and introduction of genetic testing have likely affected the pattern and timing of Rett syndrome diagnosis... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2011
• September 2011

The aim of this study was to identify characteristics of epilepsy in Rett syndrome (RTT), and relationships between epilepsy and genotype. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2013
• June 2013

Our investigation used the infrastructure of InterRett, established in 2002 with dual aims of encour- aging international collaboration and ascertaining the... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2013
• April 2013

The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2023
• December 2023

Glenn Jonathan Katharine Rosemary Pearson Carapetis AM Noonan Wyber G JR KN R BA (Education) PhD Candidate AM MBBS FRACP FAFPHM PhD FAHMS MBBS (Hons) MSc MBChB MPH FRACGP PhD Director of First Nations Strategy and Leadership Executive Director; ...

• 1. Telethon Kids Institute
• Projects

Keely Amy Tim Bebbington Finlay-Jones Jones KB AFJ TW MClinPsych/PhD BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) MBBS DCH FRACP MD McCusker Postdoctoral Research Fellow in Type 1 Diabetes Head, Early Neurodevelopment & Mental ...

• 1. Telethon Kids Institute
• Projects

Francis Glenn Steve Sarah Mitrou Pearson Zubrick Johnson FG G SR SJ BEc BA (Education) PhD Candidate FASSA, FAAMHS, MSc AM PhD BA, PostGradDip; PhD Program Head, Population Health, and Team Head, Human Development and Community Wellbeing Director of ...

• 1. Telethon Kids Institute
• Projects
• The ARC Centre of Excellence for Children and Families over the Life Course

A severity assessment was rapidly developed with input from multiple stakeholders. Refinement through ongoing validation is required for future clinical trials. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2019
• August 2019

Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS Registry to evaluate associations between child behaviours and caregiver mental well-being. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• September 2021