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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.

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MYOVISION

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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:

    • www.myositis.org

    • Email:

    • [email protected]

      • Address:Phone:

      • 1737 King Street 1-800-821-7356 Suite 600Alexandria, VA 22314


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