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Showing results for "autism"
Research
Content Validation of the Communication Inventory Disability–Observer Reported CID-ORCDKL5 deficiency disorder is a rare and severe developmental and epileptic encephalopathy that has profound effects on communication. It is essential that communication be measured accurately for upcoming gene therapy trials. The Communication Inventory Disability-Observer Reported was developed from a framework of communication derived from parent/caregiver interview data in consultation with disability and communication experts, and after reviewing concepts in existing measures.
Research
Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency DisorderCDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy (DEE) associated with multiple impairments and comorbidities. Outcome measures for disease-modifying clinical trials for DEEs should measurably capture a spectrum of caregiver priorities and be externally validated.
Research
Psychometric evaluation of clinician- and caregiver-reported clinical severity assessments for individuals with CDKL5 deficiency disorderThe CDKL5 Clinical Severity Assessment is a comprehensive, content-validated measurement tool capturing the diverse challenges of cyclin-dependent kinase-like 5 deficiency disorder, a genetically caused developmental epileptic encephalopathy. The CCSA is divided into clinician-reported and caregiver-reported assessments. The aim of this study was to evaluate the factor structure of these measures through confirmatory factor analysis and evaluate their validity and reliability.
News & Events
The Kids welcomes Federal Government’s commitment to early supportThe Kids Research Institute Australia welcomes today’s Federal Government announcement of a new pilot program to support babies showing early social communication differences in Western Australia.
Research
Delivery at 37 weeks' gestation is associated with a higher risk for child behavioural problemsWe suggest that 37 weeks' gestation may not be the optimal cutoff for defining perinatal risk as it applies to behavioural development.
Research
A Scoping Review of Digital Interventions Targeting Anxiety in Young ChildrenAnxiety is a leading mental health concern in childhood. Whilst a range of therapeutic approaches effectively reduce anxiety in young children, several barriers impact their implementation into practice. Digital interventions could help overcome some of these challenges; however, whether these can effectively target anxiety for children with and without Neurodevelopmental Conditions is unknown.
The ESDM aims to promote a child’s development across all domains, including language, joint attention, imitation, cognition, play and social skills, and fine and gross motor skills.
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Child protection involvement of children of mothers with intellectual disabilityChildren born to parents with intellectual disability (ID) have been shown as disproportionally represented in child protection services however with limited population-based research.
Research
An investigation of the determinants of quality of life in adolescents and young adults with Down syndromeQuality of life of young people with Down syndrome was most negatively associated with burden of medical conditions, but also with lack of friendships