In children with Rett syndrome, this study aimed to (1) describe gross motor skill trajectories; and (2) analyse the influences of genetic variant an…
The Rett Syndrome Behaviour Questionnaire (RSBQ) describes behavioural and emotional features. This study investigated total RSBQ score trajectories…
In 2024–2025, we listened to 40 siblings from across Australia share their experiences of family life and social connection. Most had a brother or si…
The visual representation of Teen Talk study findings
Aim: To describe the real-world effects of trofinetide in individuals with Rett syndrome (RTT) using the 18-month follow-up analysis of the LOTUS stu…
Developmental and epileptic encephalopathy (DEE) conditions are rare, and most have a genetic cause.
No validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabiliti…
National Siblings Day is a holiday dedicated to celebrating the bond between siblings. It is a time to recognize the importance of siblings, whether…
Intellectual and developmental disabilities (IDD) are varied in their nature and presentation. Barriers to oral healthcare are reported in studies of…