Inflammatory Myopathies Subset

Challenges in Myositis Subset Research and Clinical Trials

Research into these distinct myositis subsets faces numerous challenges. A primary difficulty is the variability in disease presentation, complicating the development of standardized diagnostic and treatment protocols. Additionally, many myositis subsets share overlapping features with other autoimmune diseases and among themselves, complicating accurate classification.
This heterogeneity can impede the design of clinical trials that capture the full spectrum of the disease. Furthermore, given
the rarity of each subset, patient recruitment for clinical trials is often slow, and the small sample sizes can limit the statistical power of studies.

Aims of the Subsets Working Group:

  1. Enhance Subset-Specific Understanding:
    Foster collaboration among researchers and clinicians to improve the understanding of each myositis subset, including their pathophysiology, clinical features, and molecular markers. This will support the development of more precise novel therapeutic targets and enhance clinical trials.
  2. Facilitate Clinical Trial Design:
    Design and promote clinical trials tailored to the unique characteristics of each myositis subset. The group aims to create more inclusive and representative trial protocols that address the specific needs and challenges of patients with each subset.
  3. Improve Patient Recruitment and Collaboration:
    Enhance global collaboration to boost patient recruitment, particularly in rare subsets, by involving multiple centers worldwide. The group seeks to connect investigators, patients, and key stakeholders, including industry and patient organizations, to support and accelerate myositis-related research.
  4. Develop Personalized Treatment Approaches:
    Focus on advancing personalized medicine by identifying biomarkers and genetic markers that could guide the development of targeted therapies for each myositis subset, ultimately improving treatment outcomes and reducing adverse effects.
  5. Develop Meaningful and More Objective Outcome Measures:
    Create reliable and objective outcome measures to assess treatment effectiveness and monitor disease progression, tailored to the specific characteristics of each myositis subset.