Jonathan Michael Tobias Carapetis AM Serralha Kollmann JR MS TK AM MBBS FRACP FAFPHM PhD FAHMS PhD, M.D., SFUW Executive Director; Head, Strep A Translation; Co-Founder of REACH Research Assistant Honorary Research Associate 08 6319 1000 08 6319 ...

• 1. Telethon Kids Institute
• Projects

This study used qualitative methods to explore how adolescents with Duchenne muscular dystrophy used a powered wheelchair standing device in their daily lives ...

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

This article describes the survey, the response rates achieved and the representativeness of the sample for the Young Minds Matter survey ...

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

This report summarizes techniques available for ventilated and spontaneously breathing infants and children in the ICU ...

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

Children with Developmental Coordination Disorder (DCD) often have difficulties running. ...

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

Existing clinical tools that measure non-seizure outcomes lack the range and granularity needed to capture skills in developmental and epileptic encephalopathy (DEE)-affected individuals who also fall in the severe to profound range of intellectual disability. This effectively excludes those with severe impairments from clinical trials, impeding the ability of sponsors to evaluate disease-modifying therapies. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2024
• June 2024

Prader-Willi Syndrome (PWS) is a rare genetic disorder associated with emotional/behavioral disturbances. These difficulties are well documented in the literature, but the positive attributes of these individuals are not described. ...

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

In this paper, we seek to provide guidance for researchers who are new to undertaking research with Aboriginal and Torres Strait Islander communities ...

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

The typical number of visits to health professionals by children with mental disorders during a 12-month period is relatively small ...

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

CDKL5 Deficiency Disorder (CDD) is a rare genetic disorder with symptoms of epilepsy, developmental impairments, and other comorbidities. Currently, there are no outcome measures for CDD with comprehensive evidence of validation. This study aimed to evaluate the psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) in CDD. Quality of Life Inventory-Disability was administered to 152 parent caregivers registered with the International CDKL5 Disorder Database (ICDD). ...

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

Amy Andrew Helen Jenny Martyn Melissa Finlay-Jones Whitehouse Watch and listen to Andrew Leonard Downs Symons Licari AFJ AJ HM JA MS ML BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) PhD MBChB MPH BApplSci (physio) MSc PhD B.A. (Hons ...

• 1. Telethon Kids Institute
• Projects

There are limited psychometric data on outcome measures for children with Developmental Epileptic Encephalopathies (DEEs), beyond measuring seizures, and no data to describe meaningful change. This study aimed to explore parent perceptions of important differences in functional abilities that would guide their participation in clinical trials. ...

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