MYOVISION

1
MYOVISION
Myositis patient registry being developed by The
Myositis Association in conjunction with
Cincinnati Childrens Hospital Medical
Center Registry will include data on adults and
children Registry is limited to residents of
the U.S. and Canada
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Focus

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

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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 Childrens
server Phone follow-up for questions unanswered
or to resolve confusion Promotion to
physicians with flyers, fax form for patients,
conferences, etc.
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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

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