Inclusion Body Myositis (IBM) Working Group

Challenges in IBM Research and Clinical Trials

  1. Lack of effectiv therapies and the resistance of IBM to traditional immunosuppressive treatments complicate the management of the disease.
  2. The slow progression of symptoms poses difficulties in measuring the efficacy of potential treatments within the limited timeframes of clinical trials.
  3. The rarity of the disease further complicates patient recruitment for robust clinical trials.

Aims of the IBM Working Group:

  1. Advance Research on IBM Pathophysiology: Collaborate with researchers and clinicians to improve understanding of IBM's molecular and cellular mechanisms, with the goal of identifying
    potential therapeutic targets.
  2. Facilitate IBM-Specific Clinical Trials: Develop and promote clinical trials tailored to the unique challenges of IBM, focusing on innovative treatments that address the progressive nature of the disease. Develop trial and enrichment strategies, biomarkers and outcome measures which can help early identification and differentiation of potential therapeutic targets.
  3. Enhance Diagnostic Accuracy and Outcome Measures: Work towards establishing better and early diagnostic tools and criteria to differentiate IBM from other inflammatory myopathies and related conditions, which will further foster recruitment and enrollment of early IBM patients where immunomodulatory therapies may be more suitable. Moreover, we need to develop and validate novel outcome measures that are reliable, clinically meaningful and responsive to
    change in a clinical trial.
  4. Encourage Multicenter Collaboration: Expand collaboration between medical centers and research institutions to pool data, share knowledge, and accelerate progress in IBM research and treatment development through natural history and interventional studies.