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The study investigated the effect of seizure and medication burden at initial contact with the International CDKL5 Disorder Database on subsequent development and clinical severity and compared quality of life among those whose development progressed, remained stable, or regressed between baseline and follow-up.
This cross-sectional study examined parental well-being in caregivers of children with one of three genetic disorders associated with intellectual disability.
Participation for girls and women with Rett syndrome could be enhanced by stronger local community supports.
The diagnosis of a rare disorder is dependent on the clinician's particular knowledge and experience, and can be challenging when the presentation is variable.
The Kids Research Institute Australia researcher Dr Melissa O’Donnell has been named Woodside Early Career Scientist of the Year at the 2018 Premier’s Science Awards for her internationally recognised work in the area of child abuse and neglect.
A team of researchers passionate about the social and emotional wellbeing of children have been refining a survey questionnaire.
Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763
Find our booklet on Social and Emotional Wellbeing on this page
An estimated half of all children with cerebral palsy also have comorbid intellectual disability, the domains of QOL for these children are not well understood
Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763