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Research

Implementing telehealth support to increase physical activity in girls and women with Rett syndrome-ActivRett: protocol for a waitlist randomised controlled trial

Individuals with Rett syndrome (RTT) experience impaired gross motor skills, limiting their capacity to engage in physical activities and participation in activities. There is limited evidence of the effectiveness of supported physical activity interventions. This study aims to evaluate the effects of a telehealth-delivered physical activity programme on physical activity, sedentary behaviour and quality of life in RTT.

Research

Community Priority setting for Fetal Alcohol Spectrum Disorder Research in Australia

Introduction Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder caused by prenatal alcohol exposure (PAE). FASD research is a rapidly growing field that crosses multiple disciplines. To ensure research is relevant and meaningful for people living with FASD, their families, and the broader public there is a need to engage community members in setting priorities for research.

Research

Development of a sustained release implant of benzathine penicillin G for secondary prophylaxis of rheumatic heart disease

Regular intramuscular (i.m.) benzathine penicillin G (BPG) injections have been the cornerstone of rheumatic heart disease (RHD) secondary prophylaxis since the 1950s. Patient adherence to IM BPG is poor, largely due to pain, the need for regular injections every 3-4 weeks and health sector delivery challenges in resource-limited settings. There is an urgent need for new approaches for secondary prophylaxis, such as an implant which could provide sustained penicillin concentrations for more than 6 months.

Research

Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder

CDKL5 deficiency disorder (CDD) results in early-onset epilepsy and lifelong cognitive and motor impairments. With no validated measure for communication in CDD, this study evaluated the psychometric properties of the Communication and Symbolic Behavior Scales-Developmental Profile Infant Toddler Checklist.

Research

Factors Influencing Parental Acceptance of Trans Children and Young People: Findings from Trans Pathways

Trans youth are at high risk of mental health difficulties and negative life events. Strong parental support is highly protective however there is little understanding of what factors facilitate the process of parental understanding and acceptance of a child’s gender identity.

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Evaluation of Low-intensity Therapist-Delivered Intervention in Addition to Parent Coaching for Young Children with Autism Spectrum Disorder

Parents are often expected to be the primary implementers of intervention for their young children with autism spectrum disorder (ASD). The provision of a few hours a week of intervention by a trained therapist, in addition to parent-implemented intervention, could increase child outcomes compared to parent-implemented intervention in isolation.

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Monitoring disease progression in childhood bronchiectasis

Bronchiectasis (not related to cystic fibrosis) is a chronic lung disease caused by a range of etiologies but characterized by abnormal airway dilatation, recurrent respiratory symptoms, impaired quality of life and reduced life expectancy.

Research

The effect of azithromycin on structural lung disease in infants with cystic fibrosis (COMBAT CF): a phase 3, randomised, double-blind, placebo-controlled clinical trial

Structural lung disease and neutrophil-dominated airway inflammation is present from 3 months of age in children diagnosed with cystic fibrosis after newborn screening. We hypothesised that azithromycin, given three times weekly to infants with cystic fibrosis from diagnosis until age 36 months, would reduce the extent of structural lung disease as captured on chest CT scans.

Research

Fetal alcohol spectrum disorder resources for health professionals: a scoping review protocol

People with fetal alcohol spectrum disorder (FASD) encounter a range of health and allied health providers and require specialised support to ensure health services are provided safely and effectively. Not all health professionals possess the knowledge or expertise required for the identification, assessment, referral and management of FASD.

Research

Parents' nonstandard work schedules and parents' perception of adolescent social and emotional wellbeing

We investigated the association between joint parents' work schedules and parent-reported adolescent mental health and test parental time for adolescents and parenting style as mediators.