Participating in research studies is essential to discovering new, more effective tests and treatments for different conditions. TMA members who have been involved in past clinical trials highly recommend it as a way to further knowledge of rare diseases like myositis.
Visit ClinicalTrials.gov to find a list of disease-specific research studies for:
- BYM338: Novartis is enlisting sites to test this drug (which has been given breakthrough status) for inclusion-body myositis. Recruitment has begun in Houston, Texas and Phoenix, Arizona. Other sites selected but not recruiting as yet are in Orange, California; Miami, Florida; Kansas City, Kansas; Baltimore, Maryland; Boston, Massachusetts; Columbus, Ohio; Portland, Oregon; and Dallas, Texas. In addition, there are five sites in Italy and one in Denmark. Others will be added. Patients and their physicians can call Novartis Pharmaceuticals at 1-888-669-6682 to request information. Information is also updated on the clinical trials website. Go to www.clinicaltrials.gov and search for inclusion-body myositis. You'll see two studies. The completed one is the small trial by TMA Medical Advisor Dr. Steven Greenberg.
- The NIH Twin-Sib Study: risk factors and mechanisms for the development of systemic autoimmune diseases in adults and children. This study evaluates same-gender siblings within four years of age where one has been diagnosed within the last four years with rheumatoid arthritis, polyarticular juvenile idiopathic arthritis, lupus, systemic sclerosis or polymyositis/dermatomyositis/inclusion body myositis, and the other has no autoimmune disease.
- The MYORISK Study: to determine if those with myositis, and particularly those with anti-synthetase syndrome (myositis with frequent interstitial lung disease and arthritis), have experienced different environmental exposures before disease onset than other polymyositis/dermatomyositis patients and healthy controls. Adult or juvenile polymyositis/dermatomyositis patients diagnosed within the last two years are eligible for enrollment.
- The Myositis in Military Personnel Study: compares those who developed any form of myositis during U.S. active duty service, with matched persons who did not develop an autoimmune disease during active duty to assess factors that might have led to the development of their myositis.
Updated March 2012