MYOVISION Myositis patient registry being developed by The Myositis Association in conjunction with Cincinnati Children’s Hospital Medical Center Registry will include data on adults and children Registry is limited to residents of the U.S. and Canada

Focus Demographic, diagnostic and treatment information Environmental exposures Geographic Employment Hobbies Military Service

Environmental Exposures UV light Pesticides Petrochemicals Battlefield

Places of Exposure  Residential  Employment Type of industry Office or factory jobs  Hobbies  Military Deployment

Other Metrics Lifestyle Smoking Alcohol Exercise SF-12 and SF-10 Quality of Life: Physical Health Emotional Health

Process Surveys to be mailed to 9,000 myositis patients Available to be completed online Data stored on Cincinnati Children’s server Phone follow-up for questions unanswered or to resolve confusion Promotion to physicians with flyers, fax form for patients, conferences, etc.

IRB Status IRB approved September, 2010 Online questionnaire soon to be completed IRB approval of revisions expected within 30 days and awaiting FWA approval MYOVISION expected to be announced and promoted to patients and physicians by Thanksgiving

Contact TMA Website: Address: Phone: 1737 King Street Suite 600 Alexandria, VA 22314