Skip Navigation
National Institute of Environmental Health SciencesNational Institutes of Health
Increase text size Decrease text size Print this page

IMACS Registry Forms

Certain core information relating to the details of the clinical studies and patient demographics are being collected in a common format for comparisons of different myositis studies. The following forms are included in the IMACS Trials Outcomes Data Repository.

Each of these tools and associated educational resources are available to IMACS members only. Please login to view this material.

Legend
The files are available in the following media types:
            Adobe PDF pdf icon    Microsoft Word word icon     Flash* flash icon

IMACS Clinical Trial Design

  • Description:

    This tool collects basic information about clinical trial design features or studies in the IMACS clinical data repository. This tool is available to IMACS members only.
  • Download:

IMACS Core Patient Data

  • Description:

    This form contains core demographic, diagnostic, clinical and therapeutic data for patients enrolling in the IMACS clinical data repository. This tool is available to IMACS members only.
  • Download:

IMACS Assessment of Study Outcomes

  • Description:

    This form assesses the degree of improvement or worsening in subjects enrolled in the IMACS Core Set Measure Data Repository. Assessments are completed by the enrolling physician, patient and parent (in the case of a patient who is a minor). This tool is available to IMACS members only.
  • Download:

IMACS Trial Status

  • Description:

    This is an IMACS form to describe the patient"s status in a trial and what study medication they are receiving
  • Download:

Disease Activity Score

  • Description:

    This partially validated tool has been developed by Dr. Lauren Pachman's group for assessment of global disease activity in juvenile dermatomyositis. The tool assesses muscle and cutaneous manifestations, including vasculopathic features, based on a bedside clinical assessment. Although the Disease Activity Score is not currently an IMACS Core Set Measure of Disease Activity, IMACS members have agreed to include this measure in future studies of adult and juvenile myositis. The version of the tool posted here captures additional data that is not currently being scored, but is undergoing further testing. This tool will be part of the IMACS Trials Outcomes Data Repository.
  • Download:

  • Educational Material

  • References

    Smith RL, Sundberg J, Shamiyah E, Dyer A, Pachman LM, Skin involvement in juvenile dermatomyositis is associated with loss of end row nailfold capillary loops, J Rheumatol., 2004 Aug, 31(8):1644-9
    Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15290747) Exit NIEHS

    Bode RK, Klein-Gitelman MS, Miller ML, Lechman TS, Pachman LM, Disease activity score for children with juvenile dermatomyositis: reliability and validity evidence, Arthritis Rheum., 2003 Feb 15, 49(1):7-15
    Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12579588) Exit NIEHS


USA.gov Department of Health & Human Services National Institutes of Health
This page URL: http://www.niehs.nih.gov/research/resources/collab/imacs/imacsforms.cfm
NIEHS website: http://www.niehs.nih.gov/
Email the Web Manager at webmanager@niehs.nih.gov
Last Reviewed: October 30, 2007