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Research

'Walking their walk': Reducing conflict between families of ill children and the medical profession

I review recent high-profile court cases to underscore the changing landscape of conflict and the central role that the media (and social media in particular) can play

Research

Feasibility and Effectiveness of an Individualized 12-Week "Uptime" Participation (U-PART) Intervention in Girls and Women With Rett Syndrome

The U-PART intervention was found to be feasible and effective in the short term in girls and women with Rett Syndrome

Research

Topical antibiotics for chronic suppurative otitis media

We are uncertain about the effectiveness of topical antibiotics in improving resolution of ear discharge in patients with chronic suppurative otitis media

Research

Accumulation of CD103+ CD8+ T cells in a cutaneous melanoma micrometastasis

Results support the emerging concept that CD103+ CD8+ tissue‐resident memory T cells are key mediators of cancer surveillance

Research

Gender gaps in cognitive and social-emotional skills in early primary grades: Evidence from rural Indonesia

This paper examines the magnitude and source of gender gaps in cognitive and social-emotional skills in early primary grades in rural Indonesia. Relative to boys, girls score more than 0.17 SD higher in tests of language and mathematics (cognitive skills) and between 0.18 and 0.27 SD higher in measures of social competence and emotional maturity (social-emotional skills).

Research

A call for global action for rare diseases in Africa

The outcomes of the deliberations and emphasizes the international collaborative efforts required to address the global effects of rare diseases on public health

Research

Optimising a 6-plex tetanus-diphtheria-pertussis fluorescent bead-based immunoassay

Small volume assays are required for large-scale research studies and in particular paediatric trials, where multiple measures are required from a single sample. Fluorescent bead-based technology (Bioplex/Luminex) allows high through-put and simultaneous quantification of multiple analytes in a single test. This technology uses sets of microspheres, each with a unique spectral address that can be coated with a different antigen of interest.

Research

Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders

To describe and explore carer quality of life and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders. A cross-sectional population-based, comprehensive survey including the Adult Carer questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.

Research

Malignant Melanoma in Children and Adolescents Treated in Pediatric Oncology Centers: An Australian and New Zealand Children’s Oncology Group (ANZCHOG) Study

Unlike adults, malignant melanoma in children and adolescents is rare. In adult melanoma, significant progress in understanding tumor biology and new treatments, including targeted therapies and immunotherapy have markedly improved overall survival. In sharp contrast, there is a paucity of data on the biology and clinical behavior of pediatric melanoma. We report a national case series of all pediatric and adolescent malignant melanoma presenting to ANZCHOG Childhood Cancer Centers in Australia and New Zealand.