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Maddie Age 20. Trial participant, project community member, volunteer. Without input from the community, we can't see how our research
Multiple Breath Washout Outcomes Are Sensitive to Inflammation and Infection in Children with Cystic Fibrosis The multiple breath washout technique
Find a BMI calculator for health professionals and GPs to calculate their patients' pre-pregnancy BMI.
Short and long interpregnancy intervals (IPI) are associated with increased risk of hypertensive disorders of pregnancy, yet whether this association is modified by maternal age remains unclear. We examined if the association between IPI and hypertensive disorders of pregnancy varies by maternal age at birth prior to IPI.
The Kids Discovery Centre is offering a brand-new program of fun and engaging workshops for kids during the Term 3 School Holidays.
Children born to parents with intellectual disability (ID) have been shown as disproportionally represented in child protection services however with limited population-based research.
Cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) is an ultrarare genetic condition causing developmental epileptic encephalopathy characterized by seizures and motor and intellectual disabilities. No disease-modifying therapies are available, and treatments focus mainly on symptom management to improve quality of life.
Rett syndrome (RTT) is a severe neurodevelopmental disorder affecting predominantly females and associated with variants in the MECP2 gene. Recent success in clinical trials have resulted in an expanded use of the Rett Syndrome Behaviour Questionnaire (RSBQ) for clinical and research purposes.
The clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.
Rett syndrome (RTT) is a severe neurodevelopmental disorder associated with multiple neurobehavioral abnormalities. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed for pediatric RTT observational studies. Because its application has expanded to adult and interventional studies, we evaluated the RSBQ's psychometric properties in six pediatric (n = 323) and five adult (n = 309) datasets.