Children with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource.  ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2023
• November 2023

The present estimates of relative recurrence risks for autism spectrum disorder and childhood autism will assist clinicians and families in understanding autism risk ...

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

People with intellectual disability fall at a younger age compared with the broader community ...

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

Synthesized findings demonstrate that people with intellectual disability, who live in community or residential settings, may fall more frequently, and at a younger age ...

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

We aimed to: (1) describe the patterns of sedentary time and daily steps and (2) identify the association of individual and environmental characteristitics. ...

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

This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic... ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2011
• January 2011

Carol Helen Bower Leonard C HM MBBS MSc PhD FAFPHM DLSHTM FPHA MBChB MPH Senior Principal Research Fellow, Alcohol and Pregnancy & FASD Research; Director, FASD Research Australia CRE Principal Research Fellow 08 6319 1813 +61 419 956 946 ...

• Telethon Kids Institute
• Projects

In the first multinational study of birth seasonality of autism spectrum disorder, there was evidence supporting the presence of seasonal trends in Finland and Sweden ...

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

Improved survival for children born with Down syndrome over the last 60 years has occurred incrementally, but disparities still exist ...

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

Parents of children living with rare chronic and complex diseases have called for better education and resourcing of health professionals ...

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

The aim was to assess the feasibility of assessing diet with an image-based mobile food record application in 51 adolescents and young adults with Down syndrome. ...

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

To investigate how well intellectual disability (ID) can be ascertained using hospital morbidity data compared with a population-based data source. ...

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