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Showing results for "autism"
Research
Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett SyndromeGastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear
Research
Adapting a measure of gross motor skills for individuals with CDKL5 deficiency disorder: A psychometric studyValidated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD.
The Sibling Project focuses on children, adolescents and emerging adults who have a sibling with a disability, investigating their mental health, relationships and quality of life.
Recognise. Reframe. Respond.
Research
Maternal mental health and risk of child protection involvement: Mental health diagnoses associated with increased riskThis WA data linkage study aims to assess whether maternal mental health problems are associated with worse child development outcomes, children’s safety and...
Research
The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping reviewSiblings of children with neurodevelopmental conditions have unique experiences and challenges related to their sibling role. Some develop mental health concerns as measured by self-reported surveys or parent report. Few data are available at the population level, owing to difficulties capturing wide-scale health data for siblings. Data linkage is a technique that can facilitate such research.
News & Events
$9M NHMRC funding boost for child health researchThe Kids researchers have been awarded over $9 million in National Health and Medical Research Council (NHMRC) funding towards child health research including rheumatic heart disease, respiratory infections, and autism spectrum disorder.
Research
Child Attention Deficit Hyperactive Disorder Co morbidities on Family Stress: Effect of MedicationWe examined the degree of parental and child mental health in a community sample of children diagnosed with Attention Deficit Hyperactive Disorder and the...
Research
How Families Manage the Complex Medical Needs of Their Children with MECP2 Duplication SyndromeMECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder resulting from the duplication of the methyl-CpG-binding protein 2 (MECP2) gene. The clinical features of MDS include severe intellectual disability, global developmental delay, seizures, recurrent respiratory infections, and gastrointestinal problems. The aim of this qualitative study was to explore how the parents of children with MDS manage their child's seizures, recurrent respiratory infections, and gastrointestinal symptoms, and the impact on them as parents.
Research
Severity Assessment in CDKL5 Deficiency DisorderA severity assessment was rapidly developed with input from multiple stakeholders. Refinement through ongoing validation is required for future clinical trials.