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Showing results for "rett"
Research
Functioning, participation, and quality of life in children with intellectual disability: an observational studyTo investigate associations between functioning, community participation, and quality of life (QoL) and identify whether participation mediates the effects of functioning on QoL.
Research
Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency DisorderCDKL5 deficiency disorder (CDD) results in early-onset epilepsy and lifelong cognitive and motor impairments. With no validated measure for communication in CDD, this study evaluated the psychometric properties of the Communication and Symbolic Behavior Scales-Developmental Profile Infant Toddler Checklist.
Research
Modelling quality of life in children with intellectual disability using regression treesTo identify factors associated with quality of life (QoL) in children with intellectual disability. We aimed to identify patterns of association not observable in previous hypothesis-driven regression modelling using the same data set from a cross-sectional observational study.
Research
The effect of functioning on Quality of Life Inventory-Disability measured quality of life is not mediated or moderated by parental psychological distressThe measurement of quality of life (QOL) in children with intellectual disability often relies upon proxy report via caregivers. The current study investigated whether caregiver psychological distress mediates or moderates the effects of impairment on their ratings of QOL in children with intellectual disability.
Research
Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability ResearchBuilding data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research
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Content validation of the Quality of Life Inventory—DisabilitySatisfactory content validity is reported, where ongoing consumer feedback shaped the dataset from which the final items were selected
One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.
News & Events
Maths & making a differenceFor Perth researcher Ami Bebbington, mathematics is a vital tool in her personal and professional quest to improve the lives of children everywhere.
Research
Developing sensitive endpoints for respiratory disease progression in children with neuromuscular diseaseWe hope that through earlier diagnosis and treatment of muscle weakness during sleep, we can prevent future lung failure in children with neuromuscular disorders.
Research
Intellectual disability: Population-based estimates of the proportion attributable to maternal alcohol use disorder during pregnancyThe aim of this study was to examine the association between maternal alcohol use disorder and intellectual disability in children.