Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person- and family-centered care. To date, reviews have focused broadly on the experiences of living with FASD. ...

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

To examine the lived experiences of young people successfully managing life with ADHD and investigate the applicability of adult models of Recovery to these individuals. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• August 2022

To determine whether participation in the CQI Audit and Best Practice for Chronic Disease programme improved care and outcomes for Indigenous children. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2018
• February 2018

Our objective was to develop a method that could be applied in a longitudinal cohort study to account for attrition bias in an investigation of exclusive... ...

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

Martyn Amy Symons Finlay-Jones MS AFJ B.A. (Hons) PhD. BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) Honorary Research Associate Head, Early Neurodevelopment & Mental Health; Healthway WA Senior Research Fellow 08 6319 1672 +61 8 ...

• 1. Telethon Kids Institute
• Projects

Existing clinical tools that measure non-seizure outcomes lack the range and granularity needed to capture skills in developmental and epileptic encephalopathy (DEE)-affected individuals who also fall in the severe to profound range of intellectual disability. This effectively excludes those with severe impairments from clinical trials, impeding the ability of sponsors to evaluate disease-modifying therapies. ...

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

Parental assistance with children's emotion regulation (ER) is a form of emotion socialization behavior that has recently been operationalized with the development of the Parent Assistance with Child Emotion Regulation (PACER) questionnaire. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• October 2022

Prader-Willi Syndrome (PWS) is a rare genetic disorder associated with emotional/behavioral disturbances. These difficulties are well documented in the literature, but the positive attributes of these individuals are not described. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• January 2022

The results from this review indicate that it would indeed be plausible to adapt the population health approach to sites and schools ...

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

Children with cerebral palsy performed similar haptic exploratory procedures as their typical development peers ...

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

Children with Developmental Coordination Disorder (DCD) often have difficulties running. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2013
• January 2013

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