Summary
The inflammatory myopathies, collectively named myositis, are rare chronic disorders with muscle weakness as the primary clinical complaint and where new therapies are needed. Disease mechanisms are largely unknown but genetic factors contribute to disease susceptibility and are likely to determine clinical subsets and prognosis. The aim of this network is to establish an interdisciplinary network in order to share knowledge and expertise in various scientific fields of adult and juvenile myositis, and to establish a European myositis data base with longitudinally followed patients and a biobank with DNA, serum samples and muscle biopsies. Internationally developed and partly validated outcome measures for disease activity and disease damage will be recorded. Through an EU-funded project, AutoCure, a European myositis consortium has been founded including a cohort of 850 myositis patients with clinical data, DNA and sera. We now aim to extend this cohort by including experts outside AutoCure and by collecting 500 more cases. Data collection will be facilitated by an electronic myositis register, which will be implemented in the network. A whole genome wide scan analysis and serotyping will be performed within the consortium and in collaboration with an international genetic study, MYOGEN. This study will permit us to investigate the role of genes and serological markers for disease susceptibility and prognosis. It will raise new scientific questions on possible molecular pathways in myositis that can be further tested within our network. This network with its unique large data base with well characterized myositis patients ill provide a platform for scientific work in order to achieve increased understanding of disease mechanisms and in addition will facilitate recruitment to clinical trials in myositis patients.
Duration
5 years, from May 2010 to May 2015 (08-RNP-082)
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