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MYOVISION Myositis Patient Registry: Enhancing Research for Myositis Patients in the U.S. and Canada

The MYOVISION Myositis Patient Registry, developed by The Myositis Association and Cincinnati Children's Hospital Medical Center, will collect demographic, diagnostic, treatment, and environmental exposure data on myositis patients. The registry aims to gather information on UV light, pesticides, petrochemicals, military deployment, lifestyle factors, and quality of life metrics. Surveys will be mailed to 9,000 myositis patients and can also be completed online. The data will be securely stored and phone follow-ups will be conducted. This initiative, approved by IRB, is set to be promoted among patients and physicians soon.

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MYOVISION Myositis Patient Registry: Enhancing Research for Myositis Patients in the U.S. and Canada

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  1. 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

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

  3. Environmental Exposures • UV light • Pesticides • Petrochemicals • Battlefield

  4. Places of Exposure • Residential • Employment • Type of industry • Office or factory jobs • Hobbies • Military Deployment

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

  6. 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.

  7. 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

  8. Contact TMA • Website: • www.myositis.org • Email: • tma@myositis.org • Address:Phone: • 1737 King Street 1-800-821-7356 Suite 600 Alexandria, VA 22314

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