Data linkage of population administrative data is being investigated as a tool for pharmacovigilance in pregnancy in Australia. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2010
• November 2010

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 study investigated the effect of seizure and medication burden at initial contact with the International CDKL5 Disorder Database on subsequent development and clinical severity and compared quality of life among those whose development progressed, remained stable, or regressed between baseline and follow-up. ...

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

Perinatal characteristics, early childhood development and medical co-morbidities in MECP2 Duplication syndrome ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2016
• January 2016

The Robert Connor Dawes Foundation has joined forces with the Ethan Davies Fellowship to co-fund a Telethon Kids Institute initiative aimed at uncovering new treatments for aggressive childhood brain tumours. ...

• 1. Telethon Kids Institute
• News & Events
• News & Events at Telethon Kids
• 2019
• April

To examine the prevalence, cumulative incidence, and survival in an Australian cohort with Rett syndrome (RTT). ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2006
• March 2006

We wanted to embark on an epidemiological research project that would contribute new knowledge and, at the same time, might prove the value of the registry... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2011
• October 2011

The Chronobiology team works to understand the factors that contribute to poor lung and heart function in newborn infants and find ways to prevent heart and lung disease. ...

• 1. Telethon Kids Institute
• Our research
• Early Environment
• Early Life & Life-Course Health

CDKL5 Deficiency Disorder (CDD) is a rare genetic disorder with symptoms of epilepsy, developmental impairments, and other comorbidities. Currently, there are no outcome measures for CDD with comprehensive evidence of validation. This study aimed to evaluate the psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) in CDD. Quality of Life Inventory-Disability was administered to 152 parent caregivers registered with the International CDKL5 Disorder Database (ICDD). ...

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

Delayed development of antibodies to S. pneumoniae in infancy is associated with the development of atopy and asthma. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2015
• July 2015