Journal
RHEUMATOLOGY
Volume 50, Issue 1, Pages 137-145Publisher
OXFORD UNIV PRESS
DOI: 10.1093/rheumatology/keq261
Keywords
Juvenile myositis; Dermatomyositis; Idiopathic inflammatory myopathy; Paediatric; Registry; Biobank; Multicentre
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Funding
- Cathal Hayes Research Trust
- Wellcome Trust UK [085860]
- Action Medical Research UK [SP4252]
- Henry smith Charity
- Arthritis Research UK (formerly the Arthritis Research Campaign) [14518, 18796]
- Raynaud's and Scleroderma Association
- UK Myositis Support Group
- Wellcome Trust
- Versus Arthritis [18474] Funding Source: researchfish
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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.
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