We aim to ensure that high quality outcome measures are available to evaluate treatments and services for children with disability rigorously. We aim to translate our research into resources to support families, carers and clinicians. ...

• 1. Telethon Kids Institute
• Our research
• Brain and Behaviour
• Development and Disability
• Child Disability

Existing quality of life scales for children in the general population or with other disabilities did not capture the QOL of children with Rett syndrome ...

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

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

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

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 ...

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

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

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

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

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

People with intellectual disability were more likely to experience potentially preventable conditions at the end of their lives ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2018
• February 2018

The risk of intellectual disability was increased in children born after assisted reproductive technology in Western Australia from 1994 to 2002 ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2018
• December 2018

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

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

To investigate modifiable child and caregiver factors influencing community participation among children with Down syndrome. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• February 2022