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Showing results for "preterm birth lungs"
This paper aimed to describe the relationships between level of impairment and participation in community activities for girls and women with Rett syndrome.
Representing a 30-year interdisciplinary collaboration between The Kids, Perth Children’s Hospital, and WA Universities, the combined global impact of work from this Centre over the last 10 years has equalled some of the most influential paediatric centres around the world.
To assess how prenatal screening and diagnostic testing have impacted the diagnosis, termination and birth prevalence of Down syndrome in Western Australia...
To determine if families of children with cerebral palsy living in Australia move to less remote areas between birth and 5 years.
These project websites display extended detailed information about specific research areas.
Delayed cord clamping (DCC) is an evidence-based intervention that reduces mortality, anaemia and disability in infants born <37 weeks' gestation who do not require immediate resuscitation. However, it is neither reliably recorded nor routinely implemented in Australia. The Wait a Minute or More study aims to reduce this gap between the evidence and practice by integrating timely sharing of cord clamping data with Evidence-based Practice for Improving Quality methods to increase the proportion of preterm infants receiving DCC for 60s or longer (DCC60).
CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity.
Validated 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.
CDKL5 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.
Communication 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.