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

To investigate quality of life (QOL) and psychosocial well-being in youth with neuromuscular disorders (NMDs) who are wheelchair users. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2017
• May 2017

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. ...

• 1. 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 ...

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

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

Graham Hall GL BAppSci PhD CRFS FANZSRS FThorSoc FERS Honorary Research Associate Honorary Research Associate Professor Graham Hall is an internationally recognised respiratory physiologist and former Co-Head of Children’s Lung Health at Telethon ...

• 1. Telethon Kids Institute
• Projects
• Past projects

Explored Youth with Neuromuscular Disorders perceptions of health, health behaviors and healthcare engagement ...

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

Neuromuscular disorders, chronic diseases and low motor competence have a strong correlation to bone health for appendicular bone parameters in youth ...

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

We hope that through earlier diagnosis and treatment of muscle weakness during sleep, we can prevent future lung failure in children with neuromuscular disorders. ...

• 1. Telethon Kids Institute
• Projects

Lung function measures in a health, unsedated 1- and 2-year-old children in a South African birth cohort study ...

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

In this article, the Group Chairs of the Paediatric Assembly of the European Respiratory Society (ERS) highlight some of the most interesting abstracts presented at the 2016 ERS International Congress, which was held in London. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2017
• January 2017

This paper is an introduction to a series of articles about improved measurement of lung function in patients with chronic lung disease. ...

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