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        121-130 of 562 results for 'Rare disease'

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        Research

        Novel method to select meaningful outcomes for evaluation in clinical trials

        A standardised framework for selecting outcomes for evaluation in trials has been proposed by the Core Outcome Measures in Effectiveness Trials working group. However, this method does not specify how to ensure that the outcomes that are selected are causally related to the disease and the health intervention being studied. Causal network diagrams may help researchers identify outcomes that are both clinically meaningful and likely to be causally dependent on the intervention, and endpoints that are, in turn, causally dependent on those outcomes. ...

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        Rheumatic Heart Disease Endgame Strategy: what does it mean to community?

        Across Australia, more than 5,000 Aboriginal and Torres Strait Islander people are currently living with rheumatic heart disease (RHD) or its precursor, acute rheumatic fever (ARF). ...

        Research

        Children’s regenerative and genetic medicine program

        André Anthony Stephen Schultz Kicic Stick AS A SM MBChB, PhD, FRACP BSc (Hons) PhD MB BChir PhD MRCP FRACP Program Head, Respiratory Health RFA ...

        Research

        Interobserver Agreement When Diagnosing Hypoventilation in Children With Neuromuscular Disorders

        Neuromuscular disorders can lead to nocturnal hypoventilation. Accurate diagnosis of hypoventilation is imperative to guide treatment decisions. This study determined interobserver agreement for a number of definitions of nocturnal hypoventilation in children and adolescents with neuromuscular disorders. ...

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        Funding boost to help turn research into practical change

        Research projects sharing in a $2.1 million funding boost will seek to translate research findings into changes that benefit patients and help the health system run more efficiently. ...

        Research

        A pilot study of disease related education and psychotherapeutic support for unresolved grief in parents of children with CF

        Diagnosis of chronic disease in a child can result in unresolved grief (UG) in parents. This study aimed to evaluate the efficacy of psychological insight-oriented therapy (IOT) as a treatment for UG compared to disease related education in parents of children with cystic fibrosis. Sequence of delivery, first IOT then disease related education (or vice versa) was also examined, to let all participants experience both interventions. ...

        People

        Timo Lassmann

        Feilman Fellow; Program Head, Precision Health and Team Lead, Computational Biology ...

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        Research

        Epigenetic dysregulation of host gene expression in Toxoplasma infection with specific reference to dopamine and amyloid pathways

        Our results provide a possible functional link between Toxoplasma gondii infection and congenital/early life and adult neurological clinical signs ...

        Research

        Developing sensitive endpoints for respiratory disease progression in children with neuromuscular disease

        We hope that through earlier diagnosis and treatment of muscle weakness during sleep, we can prevent future lung failure in children with neuromuscular disorders. ...

        Research

        Down Syndrome Clinical Trial- BTD-001

        Helen Jenny Peter Leonard Downs Richmond HM JA PC MBChB MPH BApplSci (physio) MSc PhD MBBS MRCP(UK) FRACP Principal Research Fellow Program Head, ...

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