The DM Disease Activity Collaborative Study Group, and later the International Myositis Outcome Assessment Collaborative Study Group recommended development of outcome measures in all forms of IIM - Idiopathic Inflammatory Myopathies - in adults and children, and coordination and facilitation of clinical trials in adult and juvenile myositis.
The main reason stopping this group from undertaking large multi-center
trials in myositis is the lack of validated disease activity and damage indices.
For this reason, the first in a series of two workshops were held to address the
1. Use of the core set of outcome measures recently identified to
develop a myositis disease activity index, a preliminary definition of
improvement, and damage index, and
2. to develop consensus on issues related to
the general conduct of clinical trials, extend of improvement and damage,
development of inclusion and exclusion criteria and appropriate therapy, and
recommendations in regard to the trial duration, dropout criteria, safety
assessment, and post-trial evaluations. NINDS 2001
Since this was written things have progressed more on this soon. (Sorry, my research is slow)