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Showing results for "autism"

Research

A wellbeing program to promote mental health in paediatric burn patients: Study protocol

One of the most traumatic injuries a child can experience is a severe burn. Despite improvements in medical treatments which have led to better physical outcomes and reduced mortality rates for paediatric burns patients, the psychological impact associated with experiencing such a traumatic injury has mostly been overlooked. This is concerning given the high incidence of psychopathology amongst paediatric burn survivors. 

Research

Wellbeing and distress in young people with chronic conditions: how do positive psychology variables relate to mental health outcomes?

The aim of this study was to determine the unique and shared contributions of various positive psychology constructs (gratitude, optimism, hope, self-compassion, self-efficacy, and emotion regulation) to wellbeing and distress outcomes in young people living with a diverse range of chronic health conditions. 

News & Events

Neuro-affirming waiting rooms

In this blog, Occupational Therapy Clinical Lead Marie Rodatz discusses the elements needed to create a neuro-affirming environment that supports neurodiverse individuals.

Research

Wellbeing and Type 1 Diabetes

A community-led, trauma-informed psychosocial intervention to improve health outcomes of children and young people with Type-1 diabetes.

Research

Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research

Building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research

News & Events

Learning to brush teeth independently

In this blog, Curtin University Occupational Therapy student Emily Mower shares some tips to help your child successfully brush their teeth. 

Research

Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review

Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders. Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments. 

Research

Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study

CDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials. 

Research

Exploring genotype-phenotype relationships in the CDKL5 deficiency disorder using an international dataset

Characterized by early-onset seizures, global developmental delay and severe motor deficits, CDKL5 deficiency disorder is caused by pathogenic variants in the cyclin-dependent kinase-like 5 gene. Previous efforts to investigate genotype-phenotype relationships have been limited due to small numbers of recurrent mutations and small cohort sizes. Using data from the International CDKL5 Disorder Database we examined genotype-phenotype relationships for 13 recurrent CDKL5 variants and the previously analyzed historic variant groupings. We have applied the CDKL5 Developmental Score (CDS) and an adapted version of the CDKL5 Clinical Severity Assessment (CCSA), to grade the severity of phenotype and developmental outcomes for 285 individuals with CDKL5 variants.

Research

Patterns of sedentary time and ambulatory physical activity in a Danish population of girls and women with Rett syndrome

High levels of sedentary time and low daily step counts in a Danish population of females with Rett syndrome