828 research outputs found

    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

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    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

    GP trainees' experience, knowledge and attitudes towards caring for refugees, asylum seekers and undocumented migrants.

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    Context: According to the World Health Organisation 'more people are on the move now than ever before with an estimated 1 billion migrants in the world today and 68 million forcibly displaced people'. GPs are on the frontline of healthcare in the UK and have a responsibility to provide free and equitable access for everyone. Aim: The main aim of our work was to assess GP trainees' current experience, knowledge and attitudes towards caring for refugees, asylum seekers and undocumented migrants. Description: 30 final year GP trainees on the Dorset Vocational Training Scheme (VTS) were asked to participate by completing a questionnaire. Outcomes: The results show that GP trainees lack knowledge regarding migrants health needs, rights to care, including whether there is a duty to disclose an illegal immigrant and what to do if a patient could not provide proof of identification. They lacked experience and confidence in caring for this group of patients, with the biggest perceived challenge being language barriers. Conclusions: Education in primary care needs to respond to meet the challenge of population movement (5), and this project highlighted a need to improve education on migrants' rights to care, local support groups, as well as common health problems. In response, we have reviewed our curriculum and introduced an education session on refugee health for all our GP trainees in Dorset
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