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        85-96 of 419 results for 'working together'

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        An Official ATS/ERS Workshop Report: Evaluation of Respiratory Mechanics and Function in the Pediatric and Neonatal Intensive Care Units

        This report summarizes techniques available for ventilated and spontaneously breathing infants and children in the ICU ...

        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. ...

        Research

        Strengths and challenging behaviors in children and adolescents with Prader-Willi syndrome: Two sides to the coin

        Prader-Willi Syndrome (PWS) is a rare genetic disorder associated with emotional/behavioral disturbances. These difficulties are well documented in the literature, but the positive attributes of these individuals are not described. ...

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        "The problem with running"-Comparing the propulsion strategy of children with Developmental Coordination Disorder and typically developing children

        Children with Developmental Coordination Disorder (DCD) often have difficulties running. ...

        Research

        Ngulluk Moort, Ngulluk Boodja, Ngulluk Wirin (Our Family, Our Country, Our Spirit) Out-of-Home Care Study

        Brad Carrington Raewyn Carol Melissa Farrant Shepherd Mutch Michie O'Donnell Photos BM CCJ RM C M BSc (Hons), PhD PhD MBChB., DipRACOG., Cert.HPRT, FRACP., PhD BPsych (Hons), MPsych, GradDip Ed, PhD Co-Head, Aboriginal Health and Wellbeing Honorary ...

        Research

        Psychometric properties of QI-Disability in CDKL5 Deficiency Disorder: Establishing readiness for clinical trials

        CDKL5 Deficiency Disorder (CDD) is a rare genetic disorder with symptoms of epilepsy, developmental impairments, and other comorbidities. Currently, there are no outcome measures for CDD with comprehensive evidence of validation. This study aimed to evaluate the psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) in CDD. Quality of Life Inventory-Disability was administered to 152 parent caregivers registered with the International CDKL5 Disorder Database (ICDD). ...

        Research

        Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study

        This study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation. ...

        Research

        Profiling the Longitudinal Development of Babbling in Infants with Cerebral Palsy: Validation of the Infant Monitor of Vocal Production (IMP) Using the Stark Assessment of Early Vocal Development-Revised (SAEVD-R)

        We compared early vocal development in children "at risk" for cerebral palsy (CP) with typically developing (TD) infants aged 6 to 15 months using the SAEVD-R, investigating potential pre-linguistic markers of communication impairment. Additionally, we sought to examine the agreement between the SAEVD-R and IMP, which uses parent report, in identifying departure from typical vocal development in at-risk infants. ...

        Research

        Clinical and biological progress over 50 years in Rett syndrome

        Review of the clinical and biological progress over 50 years in Rett Syndrome ...

        Research

        Centre for Advanced Cancer Genomics (CACG)

        Timo Lassmann T BSc (Hons) MSc PhD Feilman Fellow; Program Head, Precision Health and Team Lead, Computational Biology timo.lassmann@telethonkids.org.au Feilman Fellow; Program Head, Precision Health and Team Lead, Computational Biology Timo ...

        Research

        Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders

        To describe and explore carer quality of life and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders. A cross-sectional population-based, comprehensive survey including the Adult Carer questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively. ...

        Research

        Mental wellbeing in non-ambulant youth with neuromuscular disorders: What makes the difference?

        Mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables ...

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