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Showing results for "Neuromuscular disorders "
Carol Melissa Bower O'Donnell MBBS MSc PhD FAFPHM DLSHTM FPHA BPsych (Hons), MPsych, GradDip Ed, PhD Honorary Emeritus Fellow Honorary Research
The aim of this study was to identify and prioritise the ten most important unanswered themes in rare disease research in Australia by integrating perspectives of key stakeholders, including people living with rare disease, parents/carers, health professionals, and rare disease community advocates.
Multiple sclerosis (MS) demonstrates a latitude gradient in prevalence and severity, implicating ultraviolet B (UVB) exposure and photoimmune mechanisms in disease risk and progression. While narrowband (NB)-UVB phototherapy has long stabilized inflammation in dermatology, its systemic immunomodulatory effects in MS remain incompletely defined.
Carcinogenic effects of ultraviolet radiation (UVR) with reference to skin cancer are the basis of widely implemented recommendations to avoid sun exposure. Whether the benefits of "restrictive sun policies" outweigh their potential harms due to diminished beneficial effects of sunlight exposure remain a matter of controversy.
This Australian-first study will simultaneously identify childhood exposure to heavy metals in regional and remote communities and provide these communities with training in drinking water quality, STEM and dental hygiene.
Examining the pathways of perinatal maternal mental health that influence child mental health and wellbeing outcomes.
Father-child attachment during the first five years of life plays a vital role in child health and wellbeing but remains an under-researched area. Recently, self-compassion has emerged as a mechanism through which parent–child attachment may be optimized via its capacity to promote parental mental health and wellbeing, yet little is known about self-compassion among fathers specifically.
Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare. We aimed to determine health service utilization by Australian children with rare diseases and barriers to accessing healthcare.
We developed the iOS smartphone app Sun Safe to support healthy sun practices in young teenagers (aged 12-13 years). The production involved co-design with young co-researchers (ie, aged 12-13 years) with a health message of using sun protection when the UV index is ≥3. Important features include real-time and location-specific weather data on the UV index and gamified educational content.
Digital mental health is changing the landscape of service delivery by addressing challenges associated with traditional therapy. However, practitioners’ use of these resources remains underexamined.