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Showing results for "autism"

Research

Lived experiences of the diagnostic assessment process for fetal alcohol spectrum disorder: A systematic review of qualitative evidence

Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person- and family-centered care. To date, reviews have focused broadly on the experiences of living with FASD.

Research

Sustained participation in annual continuous quality improvement activities improves quality of care for Aboriginal and Torres Strait Islander children

To determine whether participation in the CQI Audit and Best Practice for Chronic Disease programme improved care and outcomes for Indigenous children.

Clocking TikTok expertise across the Institute

Early career researchers across The Kids Research Institute Australia have come together in a serendipitous project that is laying the groundwork for a more informed discussion of the impact of social media on kids and young people.

Research

Developing a Model to Account for Attrition Bias in a Longitudinal Cohort

Our objective was to develop a method that could be applied in a longitudinal cohort study to account for attrition bias in an investigation of exclusive...

News & Events

Major milestone for Early Moves; a key sub-project of ORIGINS investigating early signs of learning difficulties in babies

Ground-breaking WA-led study, Early Moves has hit a major milestone, with 3,000 participants successfully recruited over a four-year period. 

Research

Outcomes following a behaviour change intervention within hospitals to improve birth registrations and hospital utilisation for Aboriginal and/or Torres Strait Islander infants

The primary objective was to determine whether a behaviour change intervention delivered to hospital staff would (1) improve the proportion of Aboriginal and/or Torres Strait Islander (Aboriginal) babies being registered and (2) reduce hospital admissions and emergency presentations for babies <6 months old. The secondary objective was an observational analysis to determine factors that might influence the proportion of registered Aboriginal births in Western Australia. 

Research

Iron Deficiency in Young Australian Children: A Hidden Health Crisis Demanding Urgent Action

Desiree Silva MBBS, FRACP, MPH, PhD Co-Director, ORIGINS desiree.silva@thekids.org.au Co-Head, The ORIGINS Project Professor Desiree Silva is

Research

Italian Version of QI-Disability for QoL Evaluation in Children and Adolescents with Intellectual Disability: Translation and Cross-Cultural Adaptation Process

Children 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.

Research

Patient-advocate-led global coalition adapting fit-for-purpose outcomes measures to assure meaningful inclusion of DEEs in clinical trials

Existing clinical tools that measure non-seizure outcomes lack the range and granularity needed to capture skills in developmental and epileptic encephalopathy (DEE)-affected individuals who also fall in the severe to profound range of intellectual disability. This effectively excludes those with severe impairments from clinical trials, impeding the ability of sponsors to evaluate disease-modifying therapies.