Skip to content
The Kids Research Institute Australia logo
Donate

No results yet

Search

Showing results for "autism"

Research

Towards evidence based care for Rett syndrome: a research model to inform management of rare disorders

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763

Research

Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency Disorder

CDKL5 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

Content Validation of the Communication Inventory Disability–Observer Reported CID-OR

CDKL5 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

Psychometric evaluation of clinician- and caregiver-reported clinical severity assessments for individuals with CDKL5 deficiency disorder

The 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.

Research

Maltreatment risk among children with disabilities

Supports are needed for families with children with disabilities to assist in meeting the child's health and developmental needs, but also to support the parents in managing the often more complex parenting environment.

Research

Child Attention Deficit Hyperactive Disorder Co morbidities on Family Stress: Effect of Medication

We examined the degree of parental and child mental health in a community sample of children diagnosed with Attention Deficit Hyperactive Disorder and the...

News & Events

$9M NHMRC funding boost for child health research

The Kids researchers have been awarded over $9 million in National Health and Medical Research Council (NHMRC) funding towards child health research including rheumatic heart disease, respiratory infections, and autism spectrum disorder.

Research

Delivery at 37 weeks' gestation is associated with a higher risk for child behavioural problems

We 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 Children

Anxiety 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.

News & Events

The Kids welcomes Federal Government’s commitment to early support

The 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.