The Myositis Association (TMA) is pleased to announce MYOVISION, a myositis patient registry designed to capture environmental exposures and other potential triggers of myositis. Utilizing funding from the Centers for Disease Control and Prevention, TMA will collect from adults and children with myositis information about their disease. Anyone who was living in the U.S. or Canada when they were diagnosed with myositis is eligible to participate in the registry.
Like many autoimmune diseases, myositis is thought to be caused by a combination of hereditary and environmental factors. By collecting the wide range of individual patient experiences, MYOVISION will provide a better understanding of who gets myositis, the possible triggers that preceded the disease, and its impact on patient lives. The information will be carefully and analyzed and will potentially enable physicians and researchers to better understand the causes of myositis.
Surveys for the patient registry can be completed online or submitted by postal mail. To participate, patients need to contact The Myositis Association at 1-800-821-7356 or TMA@myositis.org to let us know of their interest. All information collected will remain strictly confidential and will not be shared without the patient’s express permission.
Additional information can be found on the myositis homepage www.myositis.org.
This study is made possible through the funding support of the Centers for Disease Control and the technical support and expertise of Cincinnati Children's Hospital Medical Center and the National Institute of Environmental Health Sciences.