Siblings of individuals with neurodevelopmental conditions (NDCs) have greater incidence of neuropsychiatric diagnoses and neurocognitive difficulties compared to siblings of persons without NDCs. Despite suicidality being labelled a global health crisis (WHO, 2014) and NDC siblings experiencing risk factors implicated in suicidality, no previous studies examined suicidality amongst adolescent and young adult siblings of persons with NDCs. Our study aimed to bridge this gap. ...

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

Amy Keely Liz Leanne Elmie Bec Finlay-Jones Bebbington Davis Fried Janse Van Rensburg Sampson AFJ KB EA LF EJVR BS BPsych(Hons), MPsych(Clinical), ...

• 1. Telethon Kids Institute
• Projects

CDKL5 Deficiency Disorder (CDD) is a severe treatment-resistant form of early-onset epilepsy. Current treatment options are often ineffective and associated with adverse effects, forcing families to seek alternative therapies for their children including products derived from cannabis. Reportsof miraculous cures and a public preferencefor 'natural' therapies have resulted in considerable public interest, and so this study aimed to characterize the use of cannabis in these individuals, as well as compare caregiver perceptions of efficacy and safety to objective evidence of seizure control and number of antiepileptic drugs used. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• June 2021

Hand function is particularly affected and we discuss theoretical and practical perspectives for optimising hand function in Rett syndrome. ...

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

To develop guidelines for the clinical management of scoliosis in Rett syndrome through evidence review and consensus expert panel opinion. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2009
• August 2009

Scoliosis is the most common orthopaedic complication of Rett syndrome. Parents of affected individuals are vital partners in the clinical management... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2009
• June 2009

Amy Finlay-Jones AFJ BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) Head, Early Neurodevelopment & Mental Health; Healthway WA Senior ...

• 1. Telethon Kids Institute
• Projects

Improving the lives of children with a disability and their families sits at the core of our team. ...

• 1. Telethon Kids Institute
• Our research
• Brain and Behaviour
• Development and Disability

Children born to parents with intellectual disability (ID) have been shown as disproportionally represented in child protection services however with limited population-based research. ...

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

Findings show that indicators of a poor intrauterine environment are associated with an elevated risk of ID, while for ASD, and particularly ASD without ID,... ...

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