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Research
The Effects of Interpregnancy Intervals, Family Size & Sociodemographic Factors on Child Development Outcomes at Age 5This project will investigate the effects of the time interval between pregnancies (interpregnancy interval), family size and other sociodemographic factors on child development outcomes at age five.
Research
Does gastrostomy improve the lives of children with severe disability and their families?Approximately 13,000 children in Australia live with moderate to severe intellectual disability.
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.
Research
Italian Version of QI-Disability for QoL Evaluation in Children and Adolescents with Intellectual Disability: Translation and Cross-Cultural Adaptation ProcessChildren and adolescents with Intellectual Disability experience a worse Quality-of-Life (QoL) relative to typically developing peers. Thus, QoL evaluation is important for identifying support needs and improving rehabilitation effectiveness. Nevertheless, currently in Italy there are not tools with this scope. This study aims to translate and cross-culturally adapt the Quality-of-Life Inventory-Disability into Italian.
The Mums Minds Matter study is comparing three stress-reduction training programs across a custom-designed app that is working to increase long-term mental health skill application among perinatal women.
Research
International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USAThe clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.
Research
Clinical Phenotype in Individuals With Birk-Landau-Perez Syndrome Associated With Biallelic SLC30A9 Pathogenic VariantsBirk-Landau-Perez syndrome is a genetic disorder caused by biallelic pathogenic variants in SLC30A9 presenting with a complex movement disorder, developmental regression, oculomotor abnormalities, and renal impairment. It has previously been reported in 2 families. We describe the clinical phenotype of 8 further individuals from 4 unrelated families with SLC30A9-related disease.
Research
Development of a universal aftercare model for people who have presented to the emergency department for a suicidal crisis in WAThe Mental Health Commission (MHC) of Western Australia has provided funding to The Kids Research Institute Australia to undertake exploratory research to inform a WA approach to aftercare.
News & Events
Let the children speak: report calls for kids’ voices to be included in government policyA new The Kids Research Institute Australia-led report into the impact of state and national policy on children’s health has called for kids and families to have more say when it comes
More than 80,000 Australian children are expected to benefit from a trial being rolled out to 700 childcare centres across the country that aims to boost declining physical activity levels.