Helen Alix Tamara Milroy Woolard Lipscombe HM AW TL MBBS; FRANZCP; CATCAP BPsych (Hons), PhD BSc (Hons), PhD Candidate Honorary Research Fellow ...

• Telethon Kids Institute
• Projects

Helen Jenny Leonard Downs HM JA MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Program Head, Development and Disability +61 419 956 ...

• Telethon Kids Institute
• Projects

Keely Leanne Amy Bebbington Fried Finlay-Jones KB LF AFJ MClinPsych/PhD BSc DipEd MSpEd EdD BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin ...

• Telethon Kids Institute
• Projects

The Early Neurodevelopment and Mental Health team is focused on preventing childhood mental illness and optimising children’s development and wellbeing in the first years of their life. We are interested in understanding and identifying the factors that contribute to difficulties in mental health and development, as well as developing cost-effective prevention and early intervention approaches for addressing developmental needs and promoting resilience. ...

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

Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2024
• January 2024

Many children with intellectual disability live with medical comorbidities. This study examined the impacts of comorbidities on quality of life (QOL) of children with intellectual disabilities and whether impacts varied with caregiver perceptions that medical needs had been met. ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• April 2021

We investigated parental observations to identify QOL domains in children with Down Syndrome and determined whether domains differed between children and teens. ...

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

Initial evaluation suggests that QI-Disability is a reliable and valid measure of quality of life across the spectrum of intellectual disability ...

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

CDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials.  ...

• Telethon Kids Institute
• Our research
• Reports and Findings
• 2024
• February 2024

Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. ...

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