A5026917315- Autoimmune and Inflammatory Disorders Research
- Adolescent and Pediatric Healthcare
- Kawasaki Disease and Coronary Complications
- Childhood Cancer Survivors' Quality of Life
- Systemic Lupus Erythematosus Research
- Inflammasome and immune disorders
- Mechanical Circulatory Support Devices
- Coronary Artery Anomalies
- Cardiovascular Issues in Pregnancy
- Family and Disability Support Research
- Inclusion and Disability in Education and Sport
- Musculoskeletal Disorders and Rehabilitation
- Rheumatoid Arthritis Research and Therapies
- Streptococcal Infections and Treatments
- Immunodeficiency and Autoimmune Disorders
- Inflammatory Myopathies and Dermatomyositis
- Ocular Diseases and Behçet’s Syndrome
- Neurogenetic and Muscular Disorders Research
- Cerebral Palsy and Movement Disorders
- Renal Diseases and Glomerulopathies
- Cardiac Structural Anomalies and Repair
- Vasculitis and related conditions
- Cystic Fibrosis Research Advances
- Sarcoidosis and Beryllium Toxicity Research
- Dermatologic Treatments and Research
Children's Hospital at Westmead
2013-2025
Sydney Children's Hospital
2010-2025
Sydney Children’s Hospitals Network
2016-2025
The University of Sydney
2016-2025
John Hunter Children's Hospital
2010-2025
UNSW Sydney
2016-2025
Liverpool Hospital
2013-2023
Western Sydney University
2013-2021
John Hunter Hospital
2010-2020
Children's Hospital
2018
To determine whether the disease course in systemic juvenile idiopathic arthritis (JIA) can be characterized as monophasic, polycyclic, or persistent, and to early clinical laboratory characteristics used predict time remission.Forty-five children with JIA diagnosed between 1996 2000 were followed up a standardized data collection protocol, including on features (mean followup 4.9 years). Disease was considered inactive if normal. Three definitions of remission applied classify course....
Abstract Objective To determine the feasibility of conducting a randomized controlled trial 12‐week exercise intervention in children with fibromyalgia (FM) and to explore effectiveness aerobic on physical fitness, function, pain, FM symptoms, quality life (QOL). Methods patients ages 8–18 years were either aerobics or qigong. Both groups participated 3 weekly training sessions. Program adherence safety monitored at each session. Data collected testing sessions, 2 prior 1 after intervention,...
Juvenile dermatomyositis (DM) is a rare chronic inflammatory disease of childhood. The clinical course juvenile DM appears to be variable, and little known about predictors the course. aims this study were describe determine whether early laboratory features can used predict time remission and/or course.Clinical data from cohort 84 patients with prospectively entered into database (1990-2005). Remission was defined as state no active skin rash, weakness, or elevated muscle enzyme levels for...
Abstract Objective To examine the effectiveness of high‐intensity aerobic training compared with low‐intensity in terms energy cost locomotion, peak oxygen uptake, power, and self‐reported physical function children juvenile idiopathic arthritis (JIA). Methods Eighty JIA, ages 8–16 years, were enrolled a randomized, single‐blind controlled trial. Both groups participated 12‐week, 3‐times–weekly program consisting aerobics experimental group qigong control group. Subjects underwent exercise...
Juvenile idiopathic arthritis can be influenced by pain, medication adherence, and physical activity. A new digital health intervention, InteractiveClinics, aims to monitor these modifiable risk factors. Twelve children, aged 10 18 years, received daily notifications on a smartwatch record their pain levels take medications, using customised mobile app synchronised secure web-based platform. Daily activity were automatically recorded wearing smartwatch. Using quantitative descriptive...
We report on two siblings doubly heterozygous for null mutations in the recently identified AGS5 gene SAMHD1. The older female child showed mild intellectual disability with microcephaly. Her brother demonstrated a significant spastic paraparesis normal intellect and head size. Both children had an unclassified chronic inflammatory skin condition chilblains, recurrent mouth ulcers. One progressive deforming arthropathy of small large joints, secondary contractures. This family illustrate...
Objective Disease activity, organ damage, and treatment burden are often substantial in children adolescents with systemic lupus erythematous (SLE), the complex interplay among developing child, parents, peers makes effective management difficult. We aimed to describe experiences perspectives of young adults diagnosed juvenile‐onset SLE inform strategies for improving health outcomes. Methods Focus groups face‐to‐face semistructured interviews were conducted 26 patients ages 14–26 years,...
Smartwatch technology is increasingly being used to support the management of chronic health conditions. Yet, many new digital innovations fail because correct foundations are not well established. This exploratory study aims uncover challenges experienced during setup phase a smartwatch intervention, prototype development intervention for children. Five children with condition were asked wear 14 days that collects data (pain levels, medication adherence, and physical activity performance)....
Juvenile Dermatomyositis (JDM) is a rare, childhood inflammatory disease and its management can be challenging confronting for both clinicians caregivers. Little known about the perspectives of parental caregivers children with JDM. This study aimed to describe experiences parents JDM inform person-centred care. Semi-structured interviews (face-to-face, telephone) were conducted from three centres in Australia. Transcripts analysed thematically. Nineteen (15 mothers) 17 aged 8 21...
Abstract Objective To 1) assess the safety and feasibility of laboratory‐based exercise testing in juvenile idiopathic arthritis (JIA), 2) test a 3‐month program JIA, 3) pain during 4) compare ratings perceived effort (RPE) with heart rate (HR) achieved, 5) estimate training effect on metabolic efficiency gait as measured by submaximal testing. Methods Nine children JIA were enrolled 12‐week circuit involving pool, stationary bicycle, treadmill, Fitball. They underwent formal before after...
Aim Systemic lupus erythematosus is a multi-organ autoimmune disorder associated with autoantibodies of complex diversity. Antiphospholipid antibodies (aPL), which are commonly lupus, create pro-thrombotic tendency, but also non-thrombotic neurological features. Movement disorders rare neuropsychiatric complications and antiphospholipid syndrome, thromboembolic disease mechanisms have been proposed. Method We describe the clinical features, investigation findings, treatment, outcome six...