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Parental experiences of using continuous glucose monitoring in their young children with early-stage type 1 diabetes: a qualitative interview study

To explore parents' experiences of using continuous glucose monitoring in their young children with early-stage type 1 diabetes, being followed in the Australian Environmental Determinants of Islet Autoimmunity (ENDIA) study.

Effects of ganaxolone on non-seizure outcomes in CDKL5 Deficiency Disorder: Double-blind placebo-controlled randomized trial

CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy. Ganaxolone, a neuroactive steroid, reduces the frequency of major motor seizures in children with CDD. This analysis explored the effect of ganaxolone on non-seizure outcomes.

How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: “There's a Lot More to My Child Than That She Can't Wash or Dress Herself.”

The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers.

Inter-rater reliability and agreement of the Bayley-4 in a multidisciplinary team

The Bayley Scales of Infant and Toddler Development are widely used to assess early development, yet evidence for inter-rater reliability in multidisciplinary contexts remains limited. This study evaluated inter-rater reliability and agreement of the newest edition, Bayley-4, at age two years when administered by a multidisciplinary allied health team within a longitudinal cohort.

Understanding parents' perspectives of repeated blinded continuous glucose monitoring in children with early-stage type 1 diabetes and an affected first-degree relative

To explore the lived experiences of parents of children at risk of type 1 diabetes undergoing repeated blinded continuous glucose monitoring. Since 2021, children with persistent islet autoimmunity in the Environmental Determinants of Islet Autoimmunity study have been invited to participate in a sub-study involving blinded Dexcom G6 CGM.

General Movement Assessment in infancy and later cognitive outcomes: A systematic review and meta-analysis

To evaluate whether the General Movement Assessment in infancy is associated with later cognitive outcomes from early childhood through adulthood.

Co-designing a new clinical pathway to support families with children identified as having early-stage type 1 diabetes in Western Australia

Children with early-stage (pre-symptomatic) type 1 diabetes are currently identified primarily via research-based screening programmes in Australia. Once identified, families live with the knowledge that their child has an increased chance of developing symptomatic, lifelong, insulin-requiring type 1 diabetes but have no specific clinical pathway available to them in Western Australia for accessing tailored support or education. This project aimed to co-design a new clinical pathway to address this unmet need.

Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies

Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.

Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndrome

To evaluate the psychometric properties of the Quality of Life Inventory -Disability (QI-Disability) for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare developmental and epileptic encephalopathy conditions.

Confident and Trustworthy Model for Fidgety Movement Classification

General movements (GMs) are part of the spontaneous movement repertoire and are present from early fetal life onwards up to age five months. GMs are connected to infants' neurological development and can be qualitatively assessed via the General Movement Assessment. In particular, between the age of three to five months, typically developing infants produce fidgety movements and their absence provides strong evidence for the presence of cerebral palsy.