Kennislacunes

The ethical and methodological challenges in IIM research, due to the rarity and heterogeneity of the disease, are being addressed by "The International Myositis Assessment and Clinical Studies Group" (IMACS), a collaborative group of healthcare providers and researchers with experience and interest in the IIM syndromes. The group focuses on the development and validation of a core set of disease measures, response criteria for dermatomyositis and polymyositis in adults and adolescents, and consensus in the implementation of clinical trial designs, leading to international consensus in these areas and facilitating therapeutic trials in these patients.

 

Future research should 1) take into account the heterogeneity among patients and explore how the programs should be adjusted for each individual patient to further optimize the feasibility and efficacy; 2) study and define in advance the feasibility and safety of the training programs; 3) examine the feasibility, safety and efficacy of exercise training in the different phase (active vs chronic) of the disease; 4) study the sustainability of the trainings effects during a longer follow-up period; 5) consider the patients’ goals and training preferences with regard to type of exercise and location of training; 6) document feasibility of training (drop-out rate, percentage and intensity of training) to establish the dose-response relationship between exercise and outcome measures.

What are the positive and negative effects (long- and short-term) of different physical training programs, in different stages of IIM, JDM or IBM?