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Research
Twenty-five-year survival for aboriginal and caucasian children with congenital heart defects in Western Australia, 1980 to 2010Long-term survival was lower for Aboriginal children with congenital heart defects
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Mothers of Children with Autism have Different Rates of Cancer According to the Presence of Intellectual Disability in Their ChildMothers of children with autism without ID had increased risk of cancer, which may relate to common genetic pathways
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Onset of maternal psychiatric disorders after the birth of a child with autism spectrum disorder: A retrospective cohort studyMothers of a child with autism spectrum disorder have more psychiatric disorders after the birth of their child.
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ORIGINS of Neurodevelopmental Risk and ResilienceThis project aims to better understand the early genetic and environmental factors that the developing brain during a child’s first five years of life.
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Precision pathways for young children at risk of Neurodevelopmental Disorders: Early identification and adaptive intervention starting from the prenatal periodAmy Andrew Carol Deborah Gail Helen Jenny Kandice Martyn Videos Finlay-Jones Whitehouse Watch and listen to Andrew Bower Strickland Alvares Leonard
One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.
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Content validation of the Quality of Life Inventory—DisabilitySatisfactory content validity is reported, where ongoing consumer feedback shaped the dataset from which the final items were selected
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Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative studyCDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials.
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Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic reviewCommunication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders. Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments.
The Quality of Life Inventory - Disability