Validation of IMACS and PRINTO Definitions of Improvement
Principal Investigator:
Lisa Rider, Frederick Miller, Mark Gourley, NIEHS, NIH
Study Design:
Natural history study
Types & Number of IIM Studied:
Adult and Juvenile Dermatomyositis, Polymyositis, Overlap Myositis,
Inclusion Body Myositis
Entry Criteria:
Probable or definite Bohan and Peter criteria; Griggs et al. 1995 Annals of
Neurology Inclusion Body Myositis criteria
IMACS Core Set Measures Included:
All: Physician and Patient Global Activity and Damage Assessments,
Manual Muscle Testing, Childhood Myositis Assessment Scale, [Childhood]
Health Assessment Questionnaire, muscle enzymes, Myositis Disease Activity
Assessment Tool, Myositis Damage Index; Health Related Quality of Life
by SF-36 and Child Health Questionnaire
Other Measures Included:
Disease Activity Score, demographic and treatment data, extended measures
Primary Outcome:
IMACS and PRINTO Definitions of Improvement
Study Duration:
Baseline and 6 - 9 month evaluation. Open
Funding:
NIEHS, NIH
Comments:
Ongoing. Extramural centers may apply for enrollment into IMACS registry
by obtaining local IRB approval of this protocol.
Contact:
Lisa Rider, Email: riderl@mail.nih.gov; Telephone: 301-451-6272 or
Frederick Miller, Email: millerf@mail.nih.gov
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