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        Quality of life beyond diagnosis in intellectual disability – Latent profiling

        To compare quality of life (QOL) across diagnoses associated with intellectual disability, construct QOL profiles and evaluate membership by diagnostic group, function and comorbidities. ...

        Research

        The Investigation of Health-Related Topics on TikTok: A Descriptive Study Protocol

        The social media application TikTok allows users to view and upload short-form videos. Recent evidence suggests it has significant potential for both industry and health promoters to influence public health behaviours. This protocol describes a standardised, replicable process for investigations that can be tailored to various areas of research interest, allowing comparison of content and features across public health topics. ...

        Research

        Australian children living with rare diseases: health service use and barriers to accessing care

        Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare. We aimed to determine health service utilization by Australian children with rare diseases and barriers to accessing healthcare. ...

        Research

        The neglect of a child with intellectual disability as reported in Australian news media: A Foucauldian discourse analysis

        People with intellectual disability experience a high risk of being neglected and family members are often identified as the perpetrators. Analysing the media provides insight into public narratives about social problems. A search of Australian newspapers published between 2016 and 2021 identified 27 articles that predominately reported on a single case of familial neglect of an individual with intellectual disability. ...

        Research

        Content Validation of Clinician-Reported Items for a Severity Measure for CDKL5 Deficiency Disorder

        CDKL5 deficiency disorder (CDD) results in early-onset seizures and severe developmental impairments. A CDD clinical severity assessment (CCSA) was previously developed with clinician and parent-report items to capture information on a range of domains. ...

        Research

        The Rett Syndrome Gross Motor Scale–Dutch Version (RSGMS-NL) Can Reliably Assess Gross Motor Skills in Dutch Individuals with Rett Syndrome

        The Rett Syndrome Gross Motor Scale (RSGMS) is an observational measurement, assessing gross motor skills in individuals with Rett syndrome. A Dutch version is lacking. The current study aims to translate and cross-culturally adapt the original RSMGS to Dutch and assess its inter-rater and intra-rater reliability. ...

        Research

        The longitudinal relationship between BOLD signal variability changes and white matter maturation during early childhood

        Intra-individual transient temporal fluctuations in brain signal, as measured by fMRI blood oxygenation level dependent (BOLD) variability, is increasingly considered an important signal rather than measurement noise. ...

        Research

        Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives

        By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway. ...

        Research

        Intellectual disability in children conceived using assisted reproductive technology

        The risk of intellectual disability was increased in children born after assisted reproductive technology in Western Australia from 1994 to 2002 ...

        Research

        Investigating associations between birth order and autism diagnostic phenotypes

        Birth order effects have been linked to variability in intelligence, educational attainment and sexual orientation. First- and later-born children have been linked to an increased likelihood of an Autism Spectrum Disorder (ASD) diagnosis, with a smaller body of evidence implicating decreases in cognitive functioning with increased birth order. ...

        Research

        Use of health services in the last year of life and cause of death in people with intellectual disability: a retrospective matched cohort study

        People with intellectual disability were more likely to experience potentially preventable conditions at the end of their lives ...

        Research

        Evolving Trends of Gastrostomy Insertion Within a Pediatric Population

        New gastrostomy insertion among children who require long-term enteral feeding support increased over the study period ...

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