The purpose of this review was to describe literature relating to transition for young people with an intellectual disability and identify knowledge base gaps. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2012
• April 2012

This study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• October 2022

This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic factors ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2011
• April 2011

People with intellectual disabilities are at a higher risk for experiencing behavioral, emotional, and psychiatric problems in comparison with the general... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2015
• May 2015

Developmental assessment of infants with fetal growth restriction was mostly comparable to those born without fetal growth restriction at 12 months ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2020
• January 2020

To describe and explore carer quality of life and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders. A cross-sectional population-based, comprehensive survey including the Adult Carer questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• May 2021

Mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2019
• January 2019

The purpose of this work was to revise and clarify 2002 consensus criteria for the diagnosis of RTT in anticipation of treatment trials. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2010
• December 2010

This study compared socio-demographic, clinical and genetic characteristics of the international database, InterRett, and the population-based Australian... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2009
• February 2009

Feeding difficulties in Rett syndrome are complex and multifactorial. In this study, we describe the feeding experiences in Rett syndrome and examine the... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2007
• November 2007

Rett syndrome (RTT) is an X-linked dominant neurodevelopmental disorder that is usually associated with mutations in the MECP2 gene. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2007
• February 2007

Early motor impairments have been reported in children with neurodevelopmental disorders (NDD), but it is not clear if early detection of motor impairments can identify children at risk for NDD or how early such impairments might be detected. Our aim was to characterize early motor function in children later diagnosed with NDD relative to typically developing children or normative data. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• February 2021