A number of themes emerged from the qualitative data which included parents' views and concerns about the capacity of their young adult to adapt and change to life in adulthood ...

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

Investigate impacts on maternal health and family quality of life in families with a child with the CDKL5 disorder ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2017
• January 2017

The Rett Syndrome Gross Motor Scale could be an appropriate measure of gross motor skills in clinical practice and clinical trials ...

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

Families participating in the population-based and longitudinal Australian Rett Syndrome Database whose daughter had undergone spinal fusion provided data on... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2014
• April 2014

Statistical time series derived from administrative data sets form key indicators in measuring progress. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2012
• July 2012

Fourteen of 74 Chinese families known to the International Rett Syndrome Phenotype Database participated in this qualitative study. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2012
• January 2012

Rett syndrome is a severe neurodevelopmental disorder mainly affecting females and scoliosis is a common co-morbidity. Spinal fusion may be recommended if... ...

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

Big steps to better understanding developmental disorder Language key to autism inclusivity Life-changing decision helping Samuel to thrive About the ...

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

Irritability is a transdiagnostic indicator of child and adolescent internalizing and externalizing problems that is measurable from early life. The objective of this systematic review was to determine the strength of the association between irritability measured from 0 to 5 years and later internalizing and externalizing problems, to identify mediators and moderators of these relationships, and to explore whether the strength of the association varied according to irritability operationalization. ...

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

Attention to sleep hygiene remains an important management strategy for sleep problems in Rett syndrome ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2018
• July 2018