Our Project Management Team Get in Touch Get in touch with The ORIGINS Project team ORIGINSproject@telethonkids.org.au Find us at one of our two ...

• The ORIGINS Project
• About ORIGINS

Rett syndrome (RTT) is a rare neurodevelopmental disorder mainly affecting females and is caused by a mutation in the MECP2 gene. Recent research identified the domains of quality of life (QOL) important for children with RTT but there has been no investigation of domains important for adults. This qualitative study explored QOL in adults with RTT and compared domains with those previously identified for children. ...

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

The natural history of MECP2 duplication syndrome (MDS), a rare X-linked neurodevelopmental disorder with an estimated birth prevalence of 1/150,000 live births, is poorly understood due to a lack of clinical data collected for research. Such information is critical to the understanding of disease progression, therapeutic endpoints and outcome measures for clinical trials, as well as the development of therapies and orphan products. ...

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

Big steps to better understanding developmental disorder It’s more than 20 years since Dr Melissa Licari first began researching Developmental ...

• 1. Telethon Kids Institute
• Our research
• Research Impact
• 2023
• Research translation

Rett syndrome is a genetically caused neurodevelopmental disorder associated with severe impairments and complex comorbidities. This study examined predictors of anxiety and depression in Rett syndrome, including genotype. ...

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

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. ...

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

Investigating school readiness in ORIGINS' five-year-olds ...

• The ORIGINS Project
• Sub-projects
• Brain & Behaviour

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

Birth order effects have been linked to variability in intelligence, educational attainment and sexual orientation. First- and later-born children have been linked to an increased likelihood of an Autism Spectrum Disorder (ASD) diagnosis, with a smaller body of evidence implicating decreases in cognitive functioning with increased birth order. ...

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

Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS Registry to evaluate associations between child behaviours and caregiver mental well-being. ...

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