This study will evaluate subjects with adult- and childhood-onset myositis to learn more about their causes, and the immune system changes and medical problems associated with them. Myositis is an inflammatory muscle disease that can damage muscles and other organs, resulting in significant disability.
This study also intends to investigate the genetic and environmental risk factors involved in the development of myositis, an autoimmune muscle disease that causes chronic muscle weakness. Adults and children diagnosed with myositis may enroll by completing questionnaires and donating blood and urine samples.
Who Can Participate?
- Individuals meeting probable or definite criteria for Idiopathic Inflammatory Myopathies (IIM).
- Patient or parent/guardian must give informed consent to all or part of the study.
- Selected patients with undefined illnesses who may have weakness, myalgias, or an elevated CK may be evaluated to establish a diagnosis and, if they are found to have IIM, would be offered the opportunity to enter the study.
- For patients with at least one first-degree relative affected with IIIM, we will enroll all available first degree relatives (affected and unaffected) to participate in the genetics portion of the protocol.
- Severe medical disease requiring intensive care or any other conditions in which the drawing of blood or undergoing procedures needed for the study is not deemed medically appropriate will be excluded from the study.
What Is Required?
A single visit and evaluation is all that is required. All patients will undergo a complete history (including completing questionnaires) and physical examination, review of medical records, and blood and urine tests. Patients may then choose to participate in an additional 1 to 5-day evaluation, which will include additional diagnostic or research procedures.
Who Is Running the Study?
The Adult and Juvenile Myositis Study is run by physicians at the National Institute of Environmental Health Sciences (NIEHS), National Institutes of Health, U.S. Department of Health and Human Services.
Study Lead Researcher and Researcher for Pediatric Participants
Lisa Rider, M.D. is Deputy Chief of the Environmental Autoimmunity Group, and a pediatric rheumatologist with an international reputation for her work on juvenile myositis. She received her B.A. and M.D. from Duke University, completed a pediatrics residency at Seattle Children’s Hospital of University of Washington, and her fellowship in pediatric rheumatology at Seattle Children’s Hospital, Children’s National Medical Center, Washington D.C. and the National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD. She then joined Dr. Frederick Miller’s group in the Center for Biologics Evaluation and Research, Food and Drug Administration and subsequently moved to NIEHS in Bethesda, MD. Dr. Rider’s work has been focused on environmental and genetic risk factors, phenotypes, pathogenesis, outcomes, evaluation, and therapeutic trials in juvenile myositis and other systemic pediatric rheumatic diseases. She has co-led national and international myositis collaborative research groups, and authored from than 170 research publications, reviews, books, and book chapters. She has received several awards of distinction.
Researchers for Adult Participants
Adam I. Schiffenbauer, M.D.
Adam Schiffenbauer, M.D. is an Associate Research Physician in the Environmental Autoimmunity Group, and an adult rheumatologist with an expertise in myositis. He received his B.A. from The University of Chicago and his M.D. from Pennsylvania State University. He completed an internal medicine residency at George Washington University, and his fellowship in rheumatology at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD. He then joined Dr. Frederick Miller’s group in NIEHS in Bethesda, MD. Dr. Schiffenbauer’s work has been focused on environmental and genetic risk factors, phenotypes, pathogenesis, advanced imaging, evaluation, and therapeutic trials in myositis.
For More Information About This Study
- Call: 1-800-411-1222 or TTY: 1-866-411-101 (Refer to the protocol number below when contacting us about this study.)
- Email: [email protected]
- Protocol Number: 94-E-0165
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