As our Founding Director Fiona Stanley puts it, The Telethon Kids Institute was formed on a "wing and a prayer". ...

• 1. Telethon Kids Institute
• News & Events
• News & Events at Telethon Kids
• 2015
• June

Rett syndrome (RTT) is a severe neurodevelopmental disorder associated with multiple neurobehavioral abnormalities. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed for pediatric RTT observational studies. Because its application has expanded to adult and interventional studies, we evaluated the RSBQ's psychometric properties in six pediatric (n = 323) and five adult (n = 309) datasets. ...

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

PURPOSE: To develop a consensus statement for the prescription of a Powered Wheelchair Standing Device (PWSD) in young people with Duchenne muscular dystrophy (DMD). MATERIALS AND METHODS: An international multidisciplinary panel comprising clinicians and users (young people with DMD) along with their parents was consulted. A literature review was undertaken and a Delphi method was utilised to generate consensus statements. ...

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

This study describes, from the perspective of parents, how females with Rett syndrome communicate in everyday life and the barriers and facilitators to... ...

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

We argue that population-based studies are critical to overcome the selection bias seen in many clinical samples and to identify true variability within a... ...

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

The language we use shifts over time and the words we use are important. At CliniKids, we are committed to using language that is neuroaffirming and preferred by the autistic community. ...

• CliniKids
• Information hub
• Resources

We argue that 'high functioning autism' is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations ...

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

Nine out of ten incarcerated youth examined by Telethon Kids researchers as part of a ground-breaking study had some form of neuro-disability. ...

• 1. Telethon Kids Institute
• News & Events
• News & Events at Telethon Kids
• 2018
• February

CDKL5 Deficiency Disorder (CDD) is a severe treatment-resistant form of early-onset epilepsy. Current treatment options are often ineffective and associated with adverse effects, forcing families to seek alternative therapies for their children including products derived from cannabis. Reportsof miraculous cures and a public preferencefor 'natural' therapies have resulted in considerable public interest, and so this study aimed to characterize the use of cannabis in these individuals, as well as compare caregiver perceptions of efficacy and safety to objective evidence of seizure control and number of antiepileptic drugs used. ...

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

Hand function is particularly affected and we discuss theoretical and practical perspectives for optimising hand function in Rett syndrome. ...

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