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

Promoting psychological well-being and preventing distress among pregnant women is an important public health goal. In addition to adversely impacting the mother's health and well-being, psychological distress in pregnancy increases the risk of poor pregnancy outcomes, compromises infant socioemotional development and bonding, and heightens maternal and child vulnerability in the postpartum period. Mindfulness and compassion-based interventions show potential for prevention and early intervention for perinatal distress. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2020
• October 2020

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

Yasmin Adrienne Harman-Smith Gregory YHS adrienne.gregory@telethonkids.org.au BA, BHlthSc(Hons), PhD BSocSci, MPhil Head, Early Years Systems Evidence; Head, Tenders Support Unit Project Officer Yasmin.harman-smith@telethonkids.org.au ...

• 1. Telethon Kids Institute
• Projects

Desiree Silva DS MBBS, FRACP, MPH, PhD Co-Head, The ORIGINS Project Co-Head, The ORIGINS Project Professor Desiree Silva is co-director for the ORIGINS Project and a professor of paediatrics at the University of Western Australia and Joondalup ...

• 1. Telethon Kids Institute
• Projects

Desiree Silva DS MBBS, FRACP, MPH, PhD Co-Head, The ORIGINS Project Co-Head, The ORIGINS Project Professor Desiree Silva is co-director for the ORIGINS Project and a professor of paediatrics at the University of Western Australia and Joondalup ...

• 1. Telethon Kids Institute
• Projects

Experiencing stigma is associated with a range of negative outcomes for people with mental health disorders. However, little is understood about the contemporary stigma experiences of young people with anxiety and depression. This study aimed to describe these experiences using semi-structured qualitative interviews. ...

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