International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease

D. A. Isenberg, E. Allen, V. Farewell, M. R. Ehrenstein, M. G. Hanna, I. E. Lundberg, C. Oddis, C. Pilkington, P. Plotz, D. Scott, J. Vencovsky, R. Cooper, L. Rider, F. Miller, Elizabeth Adams, Helene Alexanderson, Nancy Armentrout, Zohar Argov, Richard Barohn, Suzanne BowyerHermine Brunner, Ruben Burgos-Vargas, Jeffrey Callen, Gail Cawkwell, Patrick Cherin, Yuen Li Chung, Hanna Chwalińska-Sadowska, Robert Cooper, Mary Cronin, Katarina Danko, Joyce Davidson, Peter Dent, Elizabeth Dugan, Brian Feldman, Richard Finkel, Ignacio Garcia de la Torre, Ekkehard Genth, Edward Giannini, Gerald Hengstman, Jeanne Hicks, Adam Huber, Hans Iko Huppertz, Lisa Imundo, Kent Johnson, Joseph Jorizzo, Lawrence Kagen, John Kissel, Marisa Klein-Gitelman, Abraham Garcia Kutzbach, Bianca Lang, Marissa Lassere, Carol Lindsley, Daniel Lovell, Sue Maillard, Peter Malleson, Alberto Martini, Thomas Medsger, Kevin Murray, Chester Oddis, Lauren Pachman, Amy Paller, Maria Perez, Paul Plotz, Dieter Pongratz, Angelo Ravelli, Ann Reed, Robert Rennebohm, Nicolino Ruperto, Seward Rutkove, Clyde Ryder, Jean Luc Senecal, Georges Serratrice, Jacques Serratrice, David Sherry, Kumaraswamy Sivakumar, Yeong Song, Richard Sontheimer, Ira Targoff, Maria Turner, Basiel van Engelen, Maria Villalba, Kelly Vincent, Victoria Werth, Patience White, James Witter, Robert Wortmann, Steven Ytterberg

Research output: Contribution to journalArticlepeer-review

244 Scopus citations


Objective. To devise new tools to assess activity and damage in patients with idiopathic myopathies (IIM). Methods. An international multidisciplinary consensus effort to standardize the conduct and reporting of the myositis clinical trials has been established. Two tools, known as the myositis; intention to treat index (MITAX) and the myositis disease activity assessment visual analogue scale (MYOACT), have been developed to capture activity in patients with IIM. In addition, the myositis damage index (MDI) has been devised to assess the extent and severity of damage developing in different organs and systems. These measures have been reviewed by the myositis experts participating in the International Myositis Assessment and Clinical Studies (IMACS) group and have been found to have good face validity and to be comprehensive. The instruments were assessed in two real patient exercises involving patients with adult dermatomyositis and inclusion body myositis. Results. The reliability of MITAX, MIYOACT and MDI, measured by the intraclass correlation coefficient among the physicians, and the inter-rater reliability, as assessed by variation in the physicians' rating of patients, was fair to good for most aspects of the tools. Reliability and inter-rater agreement improved at the second exercise after the participants had completed additional training. Conclusions. The MITAX, MYOACT and MDI tools, which are now undergoing validity testing, should enhance the consistency, comprehensiveness and reliability of disease activity and damage assessment in patients with myositis.

Original languageEnglish (US)
Pages (from-to)49-54
Number of pages6
Issue number1
StatePublished - Jan 2004


  • Damage assessment
  • Disease activity assessment
  • Myositis

ASJC Scopus subject areas

  • Rheumatology
  • Pharmacology (medical)


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