Supports are needed for families with children with disabilities to assist in meeting the child's health and developmental needs, but also to support the parents in managing the often more complex parenting environment. ...

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

In this study, we used 134 204 mother population to examine the odds of ASD with intellectual disability in children from 1994 to 2005 with these features ...

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

Bone mass and density are low in females with Rett syndrome. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2015
• January 2015

The purpose of this review was to describe literature relating to transition for young people with an intellectual disability and identify knowledge base gaps. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2012
• April 2012

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

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2011
• April 2011

We used population data on Western Australian singletons born from 1984 to 1999 (n = 398,353) to examine the sociodemographic characteristics of children... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2011
• March 2011

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 and ...

• 1. Telethon Kids Institute
• Projects

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 ...

• 1. Telethon Kids Institute
• Projects

Helen Emma Andrew Leonard Glasson Whitehouse Watch and listen to Andrew HM EJ AJ MBChB MPH BPsych BSc (Hons) PhD PhD Principal Research Fellow Senior Research Fellow Angela Wright Bennett Professor of Autism Research at Telethon Kids and University ...

• 1. Telethon Kids Institute
• Our research
• Expertise and technologies
• Bioinformatics

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.  ...

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

The diagnostic odyssey for people living with rare diseases (PLWRD) is often prolonged for myriad reasons including an initial failure to consider rare disease and challenges to systemically and systematically identifying and tracking undiagnosed diseases across the diagnostic journey. ...

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

This study aimed to validate qPCR assays for specific microbiota, for use on dental plaque samples stored on Whatman FTA cards to compare relative oral health risk in Rett syndrome. ...

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