This article discusses the important issue of the need for a stable definition of intellectual disability in order to allow comparisons by place and…
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…
The visual representation of Teen Talk study findings
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…
MECP2 duplication syndrome (MDS) is an ultrarare, X-linked neurodevelopmental disorder that is poorly understood in terms of its natural history and…
Research on the health literacy of parents with children with intellectual disability is limited. Understanding parents' healthcare skills and needs…
Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individ…
CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder characterised by early onset seizures combined with complex healthcare needs an…
The capacity for children to self-regulate is an important developmental task of early childhood, with caregivers playing an integral role in self-re…