Andrew Helen Jenny Nada Peter Whitehouse Watch and listen to Andrew Leonard Downs Murphy Jacoby AJ HM JA NM PJ PhD MBChB MPH BApplSci (physio) MSc PhD MAPP BA (Hons) MSc Angela Wright Bennett Professor of Autism Research at Telethon Kids Institute; ...

• Telethon Kids Institute
• Projects

Many children with intellectual disability live with medical comorbidities. This study examined the impacts of comorbidities on quality of life (QOL) of children with intellectual disabilities and whether impacts varied with caregiver perceptions that medical needs had been met. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• April 2021

Gastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2018
• September 2018

We investigated parental observations to identify QOL domains in children with Down Syndrome and determined whether domains differed between children and teens. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2017
• February 2017

Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS Registry to evaluate associations between child behaviours and caregiver mental well-being. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• September 2021

This study aimed to explore relationships between family quality of life, day occupations and activities of daily living of young persons with Down syndrome. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2014
• January 2014

This study used video supplemented by parent report data to describe the gross motor profile in females with Rett syndrome (n=99) and to investigate... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2008
• August 2008

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. ...

• 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 ...

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

The purpose of this work was to revise and clarify 2002 consensus criteria for the diagnosis of RTT in anticipation of treatment trials. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2010
• December 2010

This study compared socio-demographic, clinical and genetic characteristics of the international database, InterRett, and the population-based Australian... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2009
• February 2009

Feeding difficulties in Rett syndrome are complex and multifactorial. In this study, we describe the feeding experiences in Rett syndrome and examine the... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2007
• November 2007