A national registry for juvenile dermatomyositis and other paediatric idiopathic inflammatory myopathies: 10 years' experience; the Juvenile Dermatomyositis National (UK and Ireland) Cohort Biomarker Study and Repository for Idiopathic Inflammatory Myopathies

Objectives: The paediatric idiopathic inflammatory myopathies (IIMs) are a group of rare chronic inflammatory disorders of childhood, affecting muscle, skin and other organs. There is a severe lack of evidence base for current treatment protocols in juvenile myositis. The rarity of these conditions means that multicentre collaboration is vital to facilitate studies of pathogenesis, treatment and disease outcomes. We have established a national registry and repository for childhood IIM, which aims to improve knowledge, facilitate research and clinical trials, and ultimately to improve outcomes for these patients. Methods: A UK-wide network of centres and research group was established to contribute to the study. Standardized patient assessment, data collection forms and sample protocols were agreed. The Biobank includes collection of peripheral blood mononuclear cells, serum, genomic DNA and biopsy material. An independent steering committee was established to oversee the use of data/samples. Centre training was provided for patient assessment, data collection and entry. Results: Ten years after inception, the study has recruited 285 children, of which 258 have JDM or juvenile PM; 86% of the cases have contributed the biological samples. Serial sampling linked directly to the clinical database makes this a highly valuable resource. The study has been a platform for 20 sub-studies and attracted considerable funding support. Assessment of children with myositis in contributing centres has changed through participation in this study. Conclusions: This establishment of a multicentre registry and Biobank has facilitated research and contributed to progress in the management of a complex group of rare muscloskeletal conditions

Mothers' reports of the difficulties that their children experience in taking methotrexate for Juvenile Idiopathic Arthritis and how these impact on quality of life

BACKGROUND: Children who take methotrexate for juvenile idiopathic arthritis may experience side effects, including nausea and vomiting, leading to anticipatory nausea in some children, and fear of injections or blood tests. The aim of this study was to examine the prevalence and extent of these difficulties and their impact on quality of life. METHODS: Participants were mothers of children with JIA who were currently taking methotrexate (MTX). Mothers completed a questionnaire about MTX that was developed for the study, two questions from the treatment subscale of the Pediatric Quality of Life Inventory (PedsQL) Rheumatology scale to assess needle-related problems and the Child Health Questionnaire 50-item parent version (CHQ-PF50) to assess health-related quality of life (HRQoL). RESULTS: 171 mothers participated in the study. More than half of children were reported to have experienced one or more of: nausea or vomiting after taking MTX, anticipatory nausea, fear of blood tests or fear of injections. There was no significant difference in reported rates of sickness or needle-related problems between MTX responders (ACR70 or above), partial responders (ACR30 or ACR50) and non-responders. In multivariate analyses, variables that were significant independent predictors of one or more MTX-related difficulties included younger age, taking MTX subcutaneously and having a larger number of currently active joints. Feeling sick after taking MTX was a significant independent predictor of poorer scores on the physical summary scale of the CHQ-PF50. Anxiety about injections and feeling sick after taking MTX were significant independent predictors of poorer scores on the psychosocial summary scale. CONCLUSIONS: Difficulties in taking MTX are experienced by a significant proportion of children with JIA and these have an adverse impact on HRQoL. Approaches to help minimize these difficulties are required

The Effect of Wireless Symmetries on Cryptoanalysis

The essential unification of thin clients and suffix trees is an unfortunate quandary. In fact, few researchers would disagree with the understanding of vacuum tubes, which embodies the structured principles of cy- berinformatics. Here, we construct new atomic theory (Museum), disproving that randomized algorithms and public-private key pairs are mostly incompatible

Identifying Land Use Options for Networked Māori Owned Land Blocks to Deliver on Collective Aspirations in New Zealand

Māori (the indigenous people of New Zealand) have many opportunities and challenges to realise the potential provided by their whenua (land), wai (water) and tangata (people) to deliver to their goals and aspirations. The challenges are old and new, including environmental constraints, governance, geographic isolation, fragmented land ownership, access to finance, and lack of appropriate skills, knowledge, and networks. Extension programmes aimed at the general primary production sector have failed to attract or retain any or many Māori participants. Landowner to landowner learning built around landowner aspirations along with collective action has the potential to inform an extension approach of relevance to Māori. Shared knowledge and scale can enable the realisation of opportunities from networked primary production assets and people. A programme of work “Māori Agribusiness Extension (MABX)” is being undertaken where clusters, a grouping of Māori-owned land blocks or agribusinesses willing to collaborate or collectivise towards a common goal or agreed outcomes, are formed to enable collective learning to build confidence to implement land use change and support decision making. This paper describes the extension model being used and gives an example of one cluster

Notes from lockdown: A series of reflections on some of the political and cultural impacts of the pandemic

A series of reflections on Covid-19 that looks at: how the pandemic affects processes of bordering and increases the indeterminate grey zones within which so many people are forced to live; the way nurses are presented in the media and the hypocrisy of praising them in a moment of crisis while simultaneously devaluing their work and underpaying them; health inequalities in Newham; the inequalities in the craft sector spotlighted by the pandemic; the relationships between radical neighbourliness and local politics; how perceptions of time have been affected during lockdown - and how 24-7 capitalism may seek to take advantage of this radical reorganisation of time

Association of the IL-10 gene family locus on chromosome 1 with juvenile idiopathic arthritis (JIA)

The cytokine IL-10 and its family members have been implicated in autoimmune diseases and we have previously reported that genetic variants in IL-10 were associated with a rare group of diseases called juvenile idiopathic arthritis (JIA). The aim of this study was to fine map genetic variants within the IL-10 cytokine family cluster on chromosome 1 using linkage disequilibrium (LD)-tagging single nucleotide polymorphisms (tSNPs) approach with imputation and conditional analysis to test for disease associations