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Research

Co-design of a neurodevelopment assessment scale: A study protocol

Neurodevelopmental disorders are a heterogeneous group of conditions with overlapping symptomatology and fluctuating developmental trajectories that transcend current diagnostic categorisation. There is a need for validated screening instruments which dimensionally assess symptomatology from a holistic, transdiagnostic perspective.

Research

Co-occurring intellectual disability and autism: Associations with stress, coping, time use, and quality of life in caregivers

Having a child on the autism spectrum (AS) is known to impact caregiver quality of life (QoL), time use, and stress. A co-occurring diagnosis of intellectual disability (ID) is common among children on the autism spectrum, with ID itself impacting caregiver outcomes. This study sought to understand how co-occurring ID in children on the autism spectrum may influence caregiver-related outcomes. Secondary analysis of survey data from caregivers of 278 children on the autism spectrum with (n = 62) and without (n = 216) co-occurring ID was conducted, exploring impacts on caregiver QoL, stress, coping, and time-use.

Research

The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping review

Siblings of children with neurodevelopmental conditions have unique experiences and challenges related to their sibling role. Some develop mental health concerns as measured by self-reported surveys or parent report. Few data are available at the population level, owing to difficulties capturing wide-scale health data for siblings. Data linkage is a technique that can facilitate such research. 

Research

A core outcome set to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy

Aim: To: (1) develop a core outcome set (COS) to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy (CP) with varying communication, cognitive, and functional abilities; (2) categorize the assessment tools according to reporting method or observer-reported outcome measures; and (3) categorize the content of tools in the COS according to the International Classification of Functioning, Disability and Health (ICF).

Research

Movement difficulties in children with neurodevelopmental disorders: considering a transdiagnostic approach to classification

Children with neurodevelopmental disorders often experience difficulties in acquiring and executing movement skills. Although the motor profiles of neurodivergent children frequently overlap, rigid conceptual distinctions between diagnostic labels have been imposed by traditional categorical approaches to taxonomy. An alternative transdiagnostic approach is proposed to better represent the similarities between presentations.

Research

Neurodevelopmental impairment in children with Robin sequence: A systematic review and meta-analysis

Estimate the global prevalence of neurodevelopmental impairment in children with Robin sequence (RS) at one year or more of age.

Research

Burden of illness in Rett syndrome: initial evaluation of a disorder-specific caregiver survey

Rett syndrome (RTT) is a severe X-linked neurodevelopmental disorder associated with multiple neurologic impairments. Previous studies have shown challenges to the quality of life of individuals with RTT and their caregivers. However, instruments applied to quantify disease burden have not adequately captured the impact of these impairments on affected individuals and their families. Consequently, an international collaboration of stakeholders aimed at evaluating Burden of Illness in RTT was organized.

News & Events

WA Health funding supports development of new mental health digital tool for autism families

A co-designed digital tool to address anxiety concerns for children on the autism spectrum is set to be developed and trialled in Western Australia.

News & Events

The Kids researchers finalists in Premier’s Science Awards

Three outstanding The Kids Research Institute Australia researchers have been named finalists in the 2016 Premier's Science Awards

Research

Longitudinal observational research study: establishing the Australasian Congenital Cytomegalovirus Register (ACMVR)

Congenital cytomegalovirus (cCMV) is an important cause of long-term childhood disability. In Australia, the identification and treatment practices and the long-term clinical and neurodevelopmental outcomes of children with cCMV are unknown.

Research

Resting Energy Expenditure and Metabolic Features in Children With Septo-Optic Dysplasia

Septo-optic dysplasia (SOD) is a major cause of congenital hypopituitarism and is known to be associated with overweight and obesity in up to 44% of children. Given the role of the hypothalamus in hormonal regulation, we sought to assess the association of resting energy expenditure (REE), appetite and physical activity with SOD. 

Research

Online health literacy resources for people with intellectual disability: protocol for a grey literature scoping review

People with intellectual disability are at risk of poor physical and mental health. Risks to health are compounded by poor health literacy, that is, reduced capacity to access health services, respond quickly to changes in health status and navigate care pathways. Building health literacy skills is a strength-based way to increase health and optimise the use of healthcare services. The internet is a primary source of health information for many people, including people with intellectual disability and their families. 

News & Events

One-of-a-kind autism service offers new hope to families

Western Australian babies and children with autism and developmental delay will be able to access world-first therapies and interventions backed by the latest research, thanks a unique clinical service developed by The Kids Research Institute Australia.

People

Marisa Di Lorenzo

Senior Speech Pathologist

Creche

Creche services are available for families to use at CliniKids.

Our research

One of the unique aspects of CliniKids is the integration of clinical services with cutting-edge research. Our exceptional team of researchers work in collaboration with our clinicians to give the community access to the world's best evidence-based therapies.

News & Events

Augmentative and alternative communication

In this new blog, Senior Speech Pathologist Marisa Di Lorenzo discusses Augmentative and Alternative Communication and how it supports every individual’s access to the basic right of communication.

News & Events

Play time!

In this blog, Therapy Assistant and JASPER Practitioner Storme-Louisa Will offers some tips for promoting authentic and enjoyable play. 

News & Events

Telehealth can support families with their goals

In this blog, Speech Pathology Clinical Lead Aria May looks at telehealth and how it can support children and families with their therapy goals.