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

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

The behavioral phenotype of neurogenetic disorders associated with intellectual disability often includes psychiatric comorbidity. The objectives of this systematic review and meta-analysis were to systematically review the prevalence of psychiatric disorders and symptoms in children and adolescents ...

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

Whilst gastrostomy insertion was associated with lower survival rates than children without gastrostomy, survival improved with time ...

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

Gastrostomy was associated with health benefits including reduced all-cause and epilepsy hospitalizations, but was not protective against acute LRTI ...

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

This study aimed to describe overall survival and adult health in those with Rett syndrome. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2014
• June 2014

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

Neuromuscular disorders can lead to nocturnal hypoventilation. Accurate diagnosis of hypoventilation is imperative to guide treatment decisions. This study determined interobserver agreement for a number of definitions of nocturnal hypoventilation in children and adolescents with neuromuscular disorders. ...

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