A number of themes emerged from the qualitative data which included parents' views and concerns about the capacity of their young adult to adapt and change to life in adulthood ...

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

We describe the choice-making abilities of girls and women with Rett syndrome. ...

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

Attention to sleep hygiene remains an important management strategy for sleep problems in Rett syndrome ...

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

Social advantage may provide some protection for dental health in individuals with Rett syndrome ...

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

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

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

Sleep problems are thought to occur commonly in Rett syndrome, but there has been little research on prevalence or natural history. ...

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

This study compared the behavior profile of cases in the Australian Rett Syndrome Database (ARSD) with those in a British study using the Rett Syndrome... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2006
• March 2006

Rett syndrome is a pervasive neurological disorder with impaired gait as one criterion. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2015
• July 2015