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Disease Damage Core Set Measures

Disease Damage includes persistent changes in anatomy, physiology, pathology or function which result from previously active disease and from complications of therapy or other events. Changes associated with damage are often post-inflammatory, cumulative and irreversible. IMACS has developed a consensus that damage should be present at least 6 months despite prior immunosuppressive, rehabilitation or other therapies. The preliminary core set measures to assess myositis damage are provided below, with instructions and educational resources for many of the tools.

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

Myositis Disease Damage Index (MDI)

  • Description:

    This partially validated tool measures the degree of disease damage of all organ systems. It is composed of a series of organ-specific questions relating to the presence or absence of a given sign or symptom or problem to measure the extent of damage, and an overall rating of the disease damage of each system using a 10 cm. visual analogue scale to measure the severity of damage.
  • Download

    • Myositis Damage Index -- Word Format (http://www.niehs.nih.gov/research/resources/collab/imacs/http://www.niehs.nih.gov/research/resources/collab/imacs/docs/damage/mdi.doc)  Download Microsoft Word Viewer (93.0 KB) Myositis Damage Index -- PDF Format (http://www.niehs.nih.gov/research/resources/collab/imacs/http://www.niehs.nih.gov/research/resources/collab/imacs/docs/damage/mdi.pdf)  Download Adobe Reader (160 KB)
  • Related educational material:

    • MDI Cutaneous Teaching Slide Set (http://www.niehs.nih.gov/research/resources/collab/imacs/http://www.niehs.nih.gov/research/resources/collab/imacs/docs/damage/mdi/09_mdi_cutaneous_teaching_slide_set.swf)  Download Flash Player (44.7 KB )
    • MDI case examples -- Word Format (http://www.niehs.nih.gov/research/resources/collab/imacs/http://www.niehs.nih.gov/research/resources/collab/imacs/docs/damage/mdi-global_damage_examples.doc)  Download Microsoft Word Viewer (93.0 KB ) MDI Case examples -- PDF Format (http://www.niehs.nih.gov/research/resources/collab/imacs/http://www.niehs.nih.gov/research/resources/collab/imacs/docs/damage/mdi-global_damage_examples.pdf)  Download Adobe Reader (106 KB )
  • Reference:

    1. Isenberg DA, Allen E, Farewell V, Ehrenstein MR, Hanna MG, Lundberg IE, Oddis C, Pilkington C, Plotz P, Scott D, Vencovsky J, Cooper R, Rider L, Miller F; International Myositis and Clinical Studies Group (IMACS). International consensus outcome measures for patients with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease. Rheumatology (Oxford). 2004 Jan;43(1):49-54. Epub 2003 Jul 16. Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12867580) Exit NIEHS

Physician Global Assessment of Disease Damage

  • Description:

    This partially validated tool measures the global evaluation by the treating physician of the overall disease damage of the patient at the time of assessment using a 10 cm. visual analogue scale and a 5 point Likert scale.
  • Download:

    • Physician Global Damage -- Word Format (http://www.niehs.nih.gov/research/resources/collab/imacs/http://www.niehs.nih.gov/research/resources/collab/imacs/docs/damage/phys_glob_damage.doc)  Download Microsoft Word Viewer (28.0 KB) Physician Global Damage -- PDF Format (http://www.niehs.nih.gov/research/resources/collab/imacs/http://www.niehs.nih.gov/research/resources/collab/imacs/docs/damage/phys_glob_damage.pdf)  Download Adobe Reader (69.0 KB)
  • Related educational material:

  • Reference:

    1. Rider LG, Feldman BM, Perez MD, Rennebohm RM, Lindsley CB, Zemel LS, Wallace CA, Ballinger SH, Bowyer SL, Reed AM, Passo MH, Katona IM, Miller FW, Lachenbruch PA. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: I. Physician, parent, and patient global assessments. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum. 1997 Nov;40(11):1976-83. Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9365086) Exit NIEHS

Patient/Parent Global Assessment of Disease Damage

  • Description:

    This partially validated tool measures the global evaluation by the patient, or by the parent if the patient is a minor, of the patient's overall disease damage at the time of assessment using a 10 cm. visual analogue scale.
  • Download

  • Reference:

    1. Rider LG, Feldman BM, Perez MD, Rennebohm RM, Lindsley CB, Zemel LS, Wallace CA, Ballinger SH, Bowyer SL, Reed AM, Passo MH, Katona IM, Miller FW, Lachenbruch PA. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: I. Physician, parent, and patient global assessments. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum. 1997 Nov;40(11):1976-83. Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9365086) Exit NIEHS

Muscle Strength Testing - Manual Muscle Testing (MMT)

Functional Assessment Tools - HAQ, CHAQ

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This page URL: http://www.niehs.nih.gov/research/resources/collab/imacs/diseasedamage.cfm
NIEHS website: http://www.niehs.nih.gov/
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Last Reviewed: October 30, 2007