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Research
The psychosocial impact of childhood dementia on children and their parents: a systematic reviewChildhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis.
Research
Single-cell transcriptomic and spatial landscapes of the developing human pancreasCurrent differentiation protocols have not been successful in reproducibly generating fully functional human beta cells in vitro, partly due to incomplete understanding of human pancreas development. Here, we present detailed transcriptomic analysis of the various cell types of the developing human pancreas, including their spatial gene patterns. We integrated single-cell RNA sequencing with spatial transcriptomics at multiple developmental time points and revealed distinct temporal-spatial gene cascades.
Research
Rare disease education in Europe and beyond: time to actPeople living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient.
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Setting smart phone rulesMobile phones are an important part of diabetes management but its also important to set some family rules for your child's technology use.
Research
The Human Phenotype Ontology: Semantic Unification of Common and Rare Disease.The Human Phenotype Ontology (HPO) is widely used in the rare disease community for differential diagnostics, phenotype-driven analysis...
Research
Psychosocial characteristics and predictors of health-care use in families of young children with cystic fibrosis in Western AustraliaThis study aimed to identify psychosocial predictors in cystic fibrosis that may inform intervention strategies.
Research
Decolonising Australian Psychology: Discourses, Strategies, and PracticeThis paper discusses the role of psychology in Australia and the negative impact that certain disciplinary theories and practices have had on Aboriginal and...
Research
Facilitating Empowerment and Self-Determination Through Participatory Action ResearchThis article details the application of the participatory action research approach by the National Empowerment Project, Aboriginal community-based researchers.
Research
The impact of expanding access to early childhood education services in rural Indonesia.This article examines the relationship between preschool quality and children’s early development in a sample of over 7900 children enrolled in 578 preschools in rural Indonesia.
Research
Environment Changes Genetic Effects on Respiratory Conditions and Allergic PhenotypesGenotype-phenotype associations relating to bronchitis and allergy susceptibility are dependent on the environment