Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
International Consensus Conference to Develop Improvement Criteria for Juvenile Dermatomyositis and Adult Dermatomyositis and Polymyositis: Workshop to Define Minimal Clinical Improvement and Major Clinical Response
Monday, June 9, 2014 -
Tuesday, June 10, 2014
Location: Hotel Novotel La Defense, Paris, France
Description: Anticipated goals and use of results: We anticipate developing composite endpoints for future clinical trials that will be fully validated, endorsed by the ACR and EULAR, and used by all forthcoming myositis clinical trials and clinical studies as clinical endpoints. A likely secondary outcome of this work would be the stimulus to develop new therapies for myositis and conduct clinical trials of new therapeutic agents in myositis patients, given adequate ways to assess efficacy of new therapies in trials.
Contact: Dr. Sheila Newton(919) 541-4343
Co-funding Institute(s): National Institute of Environmental Health Sciences, Office of Rare Diseases Research
Workshop on Inflammatory Myopathy Wednesday, April 5, 2000 -
Thursday, April 6, 2000
Location: NIH Campus, Bethesda, MD
Description: The goal of this workshop was to provide a forum for researchers in the areas of myositis, muscle biology, and immunology to review the current status of research on inflammatory myopathies and explore potential new avenues of research.
Contact: Dr. Paul Plotz(301) 496-1474
Co-funding Institute(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
What are the long term effects of being on Imuran? Is it feasible that polymyositis patients can eventually be medication free for this particular autoimmune disease? What is the long term prognosis of an individual who has been diagnosed with polymyositis? I recognize that this does vary with each individual. Lastly, the anti-Jo-1 antibody blood lab ranges were modified a few years ago. How does the new system range compare to the former process? See answer
Are there any medical breakthroughs or medical trials that are being conducted for polymyositis? Can the symptoms be reversed if the proper treatment is done? See answer
My mother has polymyositis. How might this condition be treated? See answer