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Natural History Studies

These are clinical and epidemiologic studies that are not specifically investigating new therapies in adult and/or juvenile myositis being conducted by investigators that are affiliated with IMACS. Several of these studies are planning to contribute their data to the IMACS Outcomes Repository. For further information about each study, please contact the study's principal investigator.

 

Collaborative studies that are conducted under the auspices of the IMACS Group are those that involve a number of IMACS investigators and have also been reviewed by the IMACS coordinators.

 

  • MYOVISION Patient Registry (http://www.niehs.nih.gov/research/resources/imacs/naturalhistory_studies/naturalhistory_study7/index.cfm) (http://www.niehs.nih.govhttp://edit:9992/Rhythmyx/assembler/render?sys_authtype=0&sys_variantid=639&sys_revision=3&sys_contentid=35715&sys_context=0)
  • Validation of IMACS and PRINTO Definitions of Improvement ("/Rhythmyx/assembler/render?sys_contentid=35669&sys_revision=1&sys_variantid=639&sys_context=0&sys_authtype=0&sys_siteid=&sys_folderid=" sys_dependentvariantid="639" sys_dependentid="35669" inlinetype="rxhyperlink" rxinlineslot="103" sys_dependentid="35669" sys_siteid="" sys_folderid="") 
  • Short-, medium- and long-term outcome in patients with Idiopathic Inflammatory Myopathy ("/Rhythmyx/assembler/render?sys_contentid=35671&sys_revision=1&sys_variantid=639&sys_context=0&sys_authtype=0&sys_siteid=&sys_folderid=" sys_dependentvariantid="639" sys_dependentid="35671" inlinetype="rxhyperlink" rxinlineslot="103" sys_dependentid="35671" sys_siteid="" sys_folderid="") 
  • Validation of IMACS tools in Inclusion Body Myositis ("/Rhythmyx/assembler/render?sys_contentid=35672&sys_revision=1&sys_variantid=639&sys_context=0&sys_authtype=0&sys_siteid=&sys_folderid=" sys_dependentvariantid="639" sys_dependentid="35672" inlinetype="rxhyperlink" rxinlineslot="103" sys_dependentid="35672" sys_siteid="" sys_folderid="") 
  • Multicenter Long-term Outcome of Juvenile Dermatomyositis ("/Rhythmyx/assembler/render?sys_contentid=35673&sys_revision=1&sys_variantid=639&sys_context=0&sys_authtype=0&sys_siteid=&sys_folderid=" sys_dependentvariantid="639" sys_dependentid="35673" inlinetype="rxhyperlink" rxinlineslot="103" sys_dependentid="35673" sys_siteid="" sys_folderid="") 
  • Multicenter Validation Study of Revised Preliminary Definitions of Improvement ("/Rhythmyx/assembler/render?sys_contentid=35674&sys_revision=1&sys_variantid=639&sys_context=0&sys_authtype=0&sys_siteid=&sys_folderid=" sys_dependentvariantid="639" sys_dependentid="35674" inlinetype="rxhyperlink" rxinlineslot="103" sys_dependentid="35674" sys_siteid="" sys_folderid="")

 


Submit Your Study Information

IMACS members who would like to post information about their study should submit their listing to the IMACS coordinators to include the following information:

 

Study Title:
Principal Investigator:
Study Hypothesis:
Study Design:
Types & Number of IIM Studied:
Entry Criteria:
IMACS Core Set Measures Included:
Other Measures Included:
Primary Outcome:
Secondary Outcomes:
Key Trial Dates: Date of registration, start of enrollment, anticipated completion
Funding sources:
Comments:
Contact:

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