272nd ENMC international workshop: 10 Years of progress - revision of the ENMC 2013 diagnostic criteria for inclusion body myositis and clinical trial readiness. 16–18 June 2023, Hoofddorp, The Netherlands

James B. Lilleker, Elie Naddaf, Christiaan G. J. Saris, Jens Schmidt, Marianne de Visser, Conrad C. Weihl, Helene Alexandersson, Lindsay Alfano, Yves Allenbach, Umesh Badrising, Olivier Benveniste, Salman Bhai, Jan de Bleecker, Marie Christine Breeveld, Hector Chinoy, Louise Diederichsen, Mazen Dimachkie, Steven Greenberg, Mridul Johari, James LillekerUlrika Lindgren, Tom Lloyd, Pedro Machado, Tahseen Mozaffar, Roland Mischke, Merrilee Needham, Ichizo Nishino, Anders Oldfors, Christiaan Saris, Werner Stenzel, Giorgio Tasca, the 272nd ENMC workshop participants

Research output: Contribution to journalArticleAcademicpeer-review


Since the publication of the 2013 European Neuromuscular Center (ENMC) diagnostic criteria for Inclusion Body Myositis (IBM), several advances have been made regarding IBM epidemiology, pathogenesis, diagnostic tools, and clinical trial readiness. Novel diagnostic tools include muscle imaging techniques such as MRI and ultrasound, and serological testing for cytosolic 5′-nucleotidase-1A antibodies. The 272nd ENMC workshop aimed to develop new diagnostic criteria, discuss clinical outcome measures and clinical trial readiness. The workshop started with patient representatives highlighting several understudied symptoms and the urge for a timely diagnosis. This was followed by presentations from IBM experts highlighting the new developments in the field. This report is composed of two parts, the first part providing new diagnostic criteria on which consensus was achieved. The second part focuses on the use of outcome measures in clinical practice and clinical trials, highlighting current limitations and outlining the goals for future studies.
Original languageEnglish
Pages (from-to)36-51
Number of pages16
JournalNeuromuscular disorders
Publication statusPublished - 1 Apr 2024


  • Clinical trials
  • Diagnostic criteria
  • Inclusion body myositis
  • Outcome measures

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