Euromyositis - a novel electronic register to facilitate research and clinical evaluation of myositis patients
Authors: I.E. Lundberg, H. Chinoy, J. Vencovsky, K. Danko, A. Ponyi, Merete Lund Hetland, M. Ontamaa, N.S. Krogh
Journal: Annals of the Rheumatic Diseases (2010)

Background: The inflammatory myopathies are a heterogenous group of muscle disorders subclassified intopolymyositis (PM), dermatomyositis (DM) and inclusion body myositis (IBM). To improve outcome and to identifyprognostic markers, increased knowledge on molecular mechanisms that are important for disease are needed. Thiscould be achieved by longitudinal follow up of large cohorts of well-characterised myositis patients with linkage to abiobank. As these are rare diseases, this needs to be performed as part of an international collaboration.Objectives: To develop an electronic myositis register to facilitate standardized longitudinal follow up of outcomevariables to be used both for research and in clinical practise.Methods: A Delphi process followed by a consensus discussion among experts in rheumatology and neurology wasemployed to decide on the variables to be included in the register. A search for electronic registers that would fulfil ourrequirements was undertaken. Computer experts developed the register EUROMYOSITIS. The register has been testedand revised by clinicians who have entered patient data.Results: The EUROMYOSITIS register has 2 parts: one with basic data including demographic data, diagnosis andinformation important for diagnosis. The second part is to follow outcome and includes outcome measure proposed andvalidated by the International Myositis Assessment and Clinical Studies Group (IMACS) for disease activity and diseasedamage.The electronic register was developed from DANBIO, the Danish rheumatoid arthritis (RA) register, which best fulfilledour requirements for a myositis register. This is an open source register based on Plone and R as core technologies. Thelongitudinal data entered at a patient visit will show up on the screen as a score board. The integrity of the patient issecured as only the clinicians of the hospital who enter the data can see the individual patient data. Analyses can bemade on a group level with anonymous data.To date 612 prevalent and incident cases have been enrolled from 4 hospitals in 4 countries, 432 women and 170 men,missing information on 10: 334 PM, 191 DM, 4 amyopathic DM, 23 juvenile DM, 18 IBM, and 2 with unspecified myositis.40 had incomplete data. Median disease duration at first input in the register was 1.5 years (range 0-35) and the meanvalue of overall disease activity according to the physicians rating was 14.3 mm (range 0-80) and the mean value ofoverall disease damage according to the physicians scoring was 12.9 mm (range 0- 100) both on a visual analogue scale(IMACS).Conclusion: The EUROMYOSITIS is a novel electronic register feasible to use for scientists and clinicians to followmyositis patients in a standardized way (www.euromyositis.eu). It will be available for users without any costs afteradequate ethical permits have been achieved and when legal agreements have been signed with the steering committee.The EUROMYOSITIS register will facilitate future clinical research and will serve as a platform for future clinical trials inmyositis.Acknowledgement: AutoCure LSHB CT-2006-018661.