MYONET is an international collaboration between clinicians and researchers interested in deepening our understanding of the inflammatory myopathies and related conditions.
Established in 2010, EuMyoNet was the first multicentre, interdisciplinary research project on inflammatory myopathies, involving international collaborations between clinicians and basic scientists with expertise in genetics and proteomics, and patient support groups, interested in deepening our understanding of the inflammatory myopathies and related conditions.
EuMyoNet became the MyoNet Research Networking , originally operated under the European Medical Research Council, the membership organisation for all Medical Research Councils in Europe under the European Science Foundation (ESF) in Strasbourg (France). The ESF MyoNet Research Networking Programme ran for five years from May 2010 to May 2015. Subsequent funding has been from a FOREUM grant via EULAR.
The project has been highly successful and participation has grown beyond Europe. The name has since been updated to MYONET in 2013 to mirror the collaborators within the global multidisciplinary network and to preserve the legacy of the original MYONET collaboration.
The myositis global network has since flourished and is now also represented by the International Myositis Society (iMyoS) which is responsible for the highly successful biannual GCOM meetings.
What is MYONET?
The MYONET Registry is a large global web-based registry that allows for collection of uniform core and longitudinal data from patients with myositis.
Three centres took the initiative to create the originally named EuroMyositis registry with the assistance of ZiteLab ApS: The University of Manchester (Manchester, UK), Rheumatology Institute (Prague, Czech Republic) and Karolinska Institutet (Stockholm, Sweden).
The principles of the Registry are for it to be web-based, used in a clinical and/or research setting, and available to all.
Using the MYONET Registry, we can collate data regarding many patients with varying myositis phenotypes, helping us to understand more about the subclassification of the disease. The MYONET Registry is now the largest interdisciplinary myositis database with prospective longitudinally collected clinical and laboratory data as well as linked biological samples and other data.
Chair of MYONET Registry
Professor of Rheumatology and Neuromuscular Disease / Honorary Consultant Rheumatologist
The University of Manchester, Manchester, UK; Salford Royal Hospital, Salford, UK
Member / Internal medicine representative
Professor - Reference Centre for Neuro-Muscular rare diseases
Pitié-Sapêtrière Hospital, Sorbonne University, Paris France