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Your Environment. Your Health.

IMACS Studies

Overview

Over the last decade IMACS has undertaken a number of projects aimed at achieving its goals of improving the lives of children and adults who suffer from myositis by discovering better therapies and understanding the causes of these diseases. Central to these efforts have been a number of studies to develop consensus and standards on the conduct and reporting of adult and juvenile myositis investigations, including outcome measures, clinical trial design and classification of patients with myositis. Listed here is information on the studies that IMACS has reviewed and endorsed. Feel free to contact the Lead Investigators to learn more about or participate in these studies.

Completed IMACS Research Projects

IMACS Project I. Developing and Validating Core Set Measures of Myositis Disease Activity and Damage

Primary Objectives: 
Develop and validate new tools to assess disease activity and damage for patients with adult and juvenile dermatomyositis and polymyositis

Start Date: 2000
Completion Date: 2010

Lead Investigators:

Publications:

  1. Miller FW, Rider LG, Chung YL, Cooper R, Danko K, Farewell V, Lundberg I, Morrison C, Oakley L, Oakley I, Pilkington C, Vencovsky J, Vincent K, Scott DL, Isenberg DA, Int Myositis Outcome Assessment C. Proposed preliminary core set measures for disease outcome assessment in adult and juvenile idiopathic inflammatory myopathies. Rheumatology. 2001; 40(11):1262-1273. [Pub Med Miller FW, Rider LG, Chung YL, Cooper R, Danko K, Farewell V, Lundberg I, Morrison C, Oakley L, Oakley I, Pilkington C, Vencovsky J, Vincent K, Scott DL, Isenberg DA, Int Myositis Outcome Assessment C. Proposed preliminary core set measures for disease outcome assessment in adult and juvenile idiopathic inflammatory myopathies. Rheumatology. 2001; 40(11):1262-1273.]
  2. Huber AM et al. Validation and clinical significance of the childhood myositis assessment scale for assessment of muscle function in the juvenile idiopathic inflammatory myopathies. Arthritis Rheum. 2004; 50(5):1595-603. [Abstract Huber AM et al. Validation and clinical significance of the childhood myositis assessment scale for assessment of muscle function in the juvenile idiopathic inflammatory myopathies. Arthritis Rheum. 2004; 50(5):1595-603.]
  3. Isenberg DA et al. 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; 43(1): 49-54. [Abstract Isenberg DA et al. 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; 43(1): 49-54.]
  4. Rennebohm RM et al. Normal scores for nine maneuvers of the Childhood Myositis Assessment Scale. Arthritis Rheum. 2004; 51(3):365-70. [Abstract Rennebohm RM et al. Normal scores for nine maneuvers of the Childhood Myositis Assessment Scale. Arthritis Rheum. 2004; 51(3):365-70.]
  5. Huber AM, Dugan EM, Lachenbruch PA, Feldman BM, Perez MD, Zemel LS, Lindsley CB, Rennebohm RM, Wallace CA, Passo MH, Reed AM, Bowyer SL, Ballinger SH, Miller FW, Rider LG; Juvenile Dermatomyositis Disease Activity Collaborative Study Group. The Cutaneous Assessment Tool (CAT): development and reliability in juvenile idiopathic inflammatory myopathy. Rheumatology (Oxford). 2007 Oct;46(10):1606-11. [Abstract Huber AM, Dugan EM, Lachenbruch PA, Feldman BM, Perez MD, Zemel LS, Lindsley CB, Rennebohm RM, Wallace CA, Passo MH, Reed AM, Bowyer SL, Ballinger SH, Miller FW, Rider LG; Juvenile Dermatomyositis Disease Activity Collaborative Study Group. The Cutaneous Assessment Tool (CAT): development and reliability in juvenile idiopathic inflammatory myopathy. Rheumatology (Oxford). 2007 Oct;46(10):1606-11.]
  6. Isenberg DA et al. 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; 43(1): 49-54. [Abstract Isenberg DA et al. 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; 43(1): 49-54.]
  7. Huber AH et al. Preliminary validation and clinical meaning of the cutaneous assessment tool (CAT) in juvenile dermatomyositis. Arthritis Rheum. 2008; 59:214-221. [Abstract Huber AH et al. Preliminary validation and clinical meaning of the cutaneous assessment tool (CAT) in juvenile dermatomyositis. Arthritis Rheum. 2008; 59:214-221.]
  8. Huber AH et al. Alternative scoring of the cutaneous assessment tool (CAT) in juvenile dermatomyositis: Results using abbreviated formats. Arthritis Rheum. 2008; 59:352-356. [Abstract Huber AH et al. Alternative scoring of the cutaneous assessment tool (CAT) in juvenile dermatomyositis: Results using abbreviated formats. Arthritis Rheum. 2008; 59:352-356.]
  9. Rider LG et al. Damage extent and predictors in adult and juvenile dermatomyositis and polymyositis using the Myositis Damage Index (MDI). Arthritis Rheum. 2009;60:3425-35. [Abstract Rider LG et al. Damage extent and predictors in adult and juvenile dermatomyositis and polymyositis using the Myositis Damage Index (MDI). Arthritis Rheum. 2009;60:3425-35.]
  10. Lachenbruch PA et al. On determining the effects of therapy on disease damage in non-randomized studies with multiple treatments: a study of juvenile myositis. Communications in Statistics – Theory and Methods. 2009;38:3268-81. [Abstract Lachenbruch PA et al. On determining the effects of therapy on disease damage in non-randomized studies with multiple treatments: a study of juvenile myositis. Communications in Statistics – Theory and Methods. 2009;38:3268-81.]
  11. Dugan EM, Huber AM, Miller FW, and Rider LG; Photoessay of the idiopathic inflammatory myopathies. Dermatology Online Journal. 2009;15(2):1. [Abstract Dugan EM, Huber AM, Miller FW, and Rider LG; Photoessay of the idiopathic inflammatory myopathies. Dermatology Online Journal. 2009;15(2):1.] [Dermatology Online Journal Dugan EM, Huber AM, Miller FW, and Rider LG; Photoessay of the idiopathic inflammatory myopathies. Dermatology Online Journal. 2009;15(2):1.]
  12. Rider LG, Koziol D, Giannini EH, Jain MS, Smith MR, Whitney-Mahoney K, Feldman BM, Wright SJ, Lindsley CB, Pachman LM, Villalba ML, Lovell DJ, Bowyer SL, Plotz PH, Miller FW, Hicks JE; Validation of manual muscle testing and a subset of eight muscles for adult and juvenile idiopathic inflammatory myopathies. Arthritis Care Res (Hoboken). 2010 Apr;62(4):465-72. [Abstract Rider LG, Koziol D, Giannini EH, Jain MS, Smith MR, Whitney-Mahoney K, Feldman BM, Wright SJ, Lindsley CB, Pachman LM, Villalba ML, Lovell DJ, Bowyer SL, Plotz PH, Miller FW, Hicks JE; Validation of manual muscle testing and a subset of eight muscles for adult and juvenile idiopathic inflammatory myopathies. Arthritis Care Res (Hoboken). 2010 Apr;62(4):465-72.]
  13. Rider LG, Werth VP, Huber AM, Alexanderson H, Rao AP, Ruperto N, Herbelin L, Barohn R, Isenberg D, Miller FW. Measures of adult and juvenile dermatomyositis, polymyositis, and inclusion body myositis: Physician and Patient/Parent Global Activity, Manual Muscle Testing (MMT), Health Assessment Questionnaire (HAQ)/Childhood Health Assessment Questionnaire (C-HAQ), Childhood Myositis Assessment Scale (CMAS), Myositis Disease Activity Assessment Tool (MDAAT), Disease Activity Score (DAS), Short Form 36 (SF-36), Child Health Questionnaire (CHQ), physician global damage, Myositis Damage Index (MDI), Quantitative Muscle Testing (QMT), Myositis Functional Index-2 (FI-2), Myositis Activities Profile (MAP), Inclusion Body Myositis Functional Rating Scale (IBMFRS), Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI), Cutaneous Assessment Tool (CAT), Dermatomyositis Skin Severity Index (DSSI), Skindex, and Dermatology Life Quality Index (DLQI). Arthritis Care Res (Hoboken). 2011 Nov;63 Suppl 11:S118-57. doi: 10.1002/acr.20532. Review. [Abstract Rider LG, Werth VP, Huber AM, Alexanderson H, Rao AP, Ruperto N, Herbelin L, Barohn R, Isenberg D, Miller FW. Measures of adult and juvenile dermatomyositis, polymyositis, and inclusion body myositis: Physician and Patient/Parent Global Activity, Manual Muscle Testing (MMT), Health Assessment Questionnaire (HAQ)/Childhood Health Assessment Questionnaire (C-HAQ), Childhood Myositis Assessment Scale (CMAS), Myositis Disease Activity Assessment Tool (MDAAT), Disease Activity Score (DAS), Short Form 36 (SF-36), Child Health Questionnaire (CHQ), physician global damage, Myositis Damage Index (MDI), Quantitative Muscle Testing (QMT), Myositis Functional Index-2 (FI-2), Myositis Activities Profile (MAP), Inclusion Body Myositis Functional Rating Scale (IBMFRS), Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI), Cutaneous Assessment Tool (CAT), Dermatomyositis Skin Severity Index (DSSI), Skindex, and Dermatology Life Quality Index (DLQI). Arthritis Care Res (Hoboken). 2011 Nov;63 Suppl 11:S118-57. doi: 10.1002/acr.20532. Review.]

IMACS Project II. Determining Clinically Meaningful Change in Core Set Activity Measures and Developing Preliminary Definitions of Improvement

Primary Objectives: 

  1. Determine clinically meaningful change in core set activity measures
  2. Develop preliminary definitions of improvement as response criteria for adult and juvenile dermatomyositis and polymyositis

Start Date: 2002
Completion Date: 2004

Lead Investigators: 

Publications: 

  1. Rider LG, Giannini EH, Brunner HI, Ruperto N, James-Newton L, Reed AM, Lachenbruch PA, Miller FW. International consensus on preliminary definitions of improvement in adult and juvenile myositis. Arthritis Rheum. 2004; 50(7):2281-90. [Abstract Rider LG, Giannini EH, Brunner HI, Ruperto N, James-Newton L, Reed AM, Lachenbruch PA, Miller FW. International consensus on preliminary definitions of improvement in adult and juvenile myositis. Arthritis Rheum. 2004; 50(7):2281-90.] [Full Text Rider LG, Giannini EH, Brunner HI, Ruperto N, James-Newton L, Reed AM, Lachenbruch PA, Miller FW. International consensus on preliminary definitions of improvement in adult and juvenile myositis. Arthritis Rheum. 2004; 50(7):2281-90.]
  2. Rider LG, Giannini EH, Harris-Love M, Joe G, Isenberg D, Pilkington C, Lachenbruch PA, Miller FW; International Myositis Assessment and Clinical Studies Group. Defining Clinical Improvement in Adult and Juvenile Myositis. J Rheumatol. 2003 Mar;30(3):603-17. [Abstract Rider LG, Giannini EH, Harris-Love M, Joe G, Isenberg D, Pilkington C, Lachenbruch PA, Miller FW; International Myositis Assessment and Clinical Studies Group. Defining Clinical Improvement in Adult and Juvenile Myositis. J Rheumatol. 2003 Mar;30(3):603-17.]

IMACS Project III. Consensus Guidelines for the Design and Conduct of Myositis Clinical Trials

Primary Objectives:
Develop consensus in the design of myositis clinical trials, including classification criteria for myositis.

Start Date: 2002
Completion Date: 2005

Lead Investigators:

Publications:

  1. Oddis CV et al. International consensus guidelines for therapeutic trials in the idiopathic inflammatory myopathies. Arthritis Rheum. 2005; 52(9):2607-2615. [Abstract Oddis CV et al. International consensus guidelines for therapeutic trials in the idiopathic inflammatory myopathies. Arthritis Rheum. 2005; 52(9):2607-2615.]

IMACS Project IV. Dyslipidemia in Myositis Survey

Primary Objectives: 
To examine the frequency of lipid profile abnormalities in patients with myositis.

Start Date: 2009
Completion Date: 2010

Lead Investigators:

Publications:

  1. Charles-Schoeman C, Amjadi SS, Paulus HE; International Myositis Assessment and Clinical Studies Group. Treatment of dyslipidemia in idiopathic inflammatory myositis: results of the International Myositis Assessment and Clinical Studies Group survey, Clin Rheumatol. 2012 Aug;31(8):1163-8. [Abstract Charles-Schoeman C, Amjadi SS, Paulus HE; International Myositis Assessment and Clinical Studies Group. Treatment of dyslipidemia in idiopathic inflammatory myositis: results of the International Myositis Assessment and Clinical Studies Group survey, Clin Rheumatol. 2012 Aug;31(8):1163-8.]

IMACS Project V. Identification of a Candidate Core-set of Fitness and Strength Tests for Patients with Childhood or Adult Idiopathic Inflammatory Myopathies

Primary Objectives:
To develop consensus on a candidate core-set of fitness and strength tests for children and adults with myositis

Start Date: 2013
Completion Date: 2015

Lead Investigators:

Publications:

  1. van der Stap DK, Rider LG, Alexanderson H, Huber AM, Gualano B, Gordon P, van der Net J, Mathiesen P, Johnson LG, Ernste FC, Feldman BM, Houghton KM, Singh-Grewal D, Kutzbach AG, Munters LA, Takken T; International Myositis Assessment and Clinical Studies Group. Proposal for a Candidate Core Set of Fitness and Strength Tests for Patients with Childhood or Adult Idiopathic Inflammatory Myopathies. J Rheumatol. 2016 Jan;43(1):169-76. [Abstract van der Stap DK, Rider LG, Alexanderson H, Huber AM, Gualano B, Gordon P, van der Net J, Mathiesen P, Johnson LG, Ernste FC, Feldman BM, Houghton KM, Singh-Grewal D, Kutzbach AG, Munters LA, Takken T; International Myositis Assessment and Clinical Studies Group. Proposal for a Candidate Core Set of Fitness and Strength Tests for Patients with Childhood or Adult Idiopathic Inflammatory Myopathies. J Rheumatol. 2016 Jan;43(1):169-76.]

IMACS Project VI. International Myositis Classification Criteria Project

Primary Objectives: 
To develop new preliminarily validated classification criteria for adult and juvenile dermatomyositis, adult polymyositis and inclusion body myositis.

For further information on the International Myositis Classification Criteria Project, please see Classification Criteria.

Start Date: 2004
Completion Date:
Ongoing

Lead Investigators:

Publications:

  1. Lundberg IE, Tjärnlund A, Bottai M, Werth VP, Pilkington C, Visser M, Alfredsson L, Amato AA, Barohn RJ, Liang MH, Singh JA, Aggarwal R, Arnardottir S, Chinoy H, Cooper RG, Dankó K, Dimachkie MM, Feldman BM, Torre IG, Gordon P, Hayashi T, Katz JD, Kohsaka H, Lachenbruch PA, Lang BA, Li Y, Oddis CV, Olesinska M, Reed AM, Rutkowska-Sak L, Sanner H, Selva-O'Callaghan A, Song YW, Vencovsky J, Ytterberg SR, Miller FW, Rider LG; International Myositis Classification Criteria Project consortium, The Euromyositis register and The Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDRG) (UK and Ireland). 2017 European League Against Rheumatism/American College of Rheumatology classification criteria for adult and juvenile idiopathic inflammatory myopathies and their major subgroups. Ann Rheum Dis. 2017 Dec;76(12):1955-1964. doi: 10.1136/annrheumdis-2017-211468. [Abstract Lundberg IE, Tjärnlund A, Bottai M, Werth VP, Pilkington C, Visser M, Alfredsson L, Amato AA, Barohn RJ, Liang MH, Singh JA, Aggarwal R, Arnardottir S, Chinoy H, Cooper RG, Dankó K, Dimachkie MM, Feldman BM, Torre IG, Gordon P, Hayashi T, Katz JD, Kohsaka H, Lachenbruch PA, Lang BA, Li Y, Oddis CV, Olesinska M, Reed AM, Rutkowska-Sak L, Sanner H, Selva-O'Callaghan A, Song YW, Vencovsky J, Ytterberg SR, Miller FW, Rider LG; International Myositis Classification Criteria Project consortium, The Euromyositis register and The Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDRG) (UK and Ireland). 2017 European League Against Rheumatism/American College of Rheumatology classification criteria for adult and juvenile idiopathic inflammatory myopathies and their major subgroups. Ann Rheum Dis. 2017 Dec;76(12):1955-1964. doi: 10.1136/annrheumdis-2017-211468.]
  2. Lundberg IE, Tjärnlund A, Bottai M, Werth VP, Pilkington C, de Visser M, Alfredsson L, Amato AA, Barohn RJ, Liang MH, Singh JA, Aggarwal R, Arnardottir S, Chinoy H, Cooper RG, Dankó K, Dimachkie MM, Feldman BM, Garcia-De La Torre I, Gordon P, Hayashi T, Katz JD, Kohsaka H, Lachenbruch PA, Lang BA, Li Y, Oddis CV, Olesinska M, Reed AM, Rutkowska-Sak L, Sanner H, Selva-O'Callaghan A, Song YW, Vencovsky J, Ytterberg SR, Miller FW, Rider LG; International Myositis Classification Criteria Project Consortium, the Euromyositis Register, and the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (UK and Ireland). 2017 European League Against Rheumatism/American College of Rheumatology Classification Criteria for Adult and Juvenile Idiopathic Inflammatory Myopathies and Their Major Subgroups. Arthritis Rheumatol. 2017 Dec;69(12):2271-2282. doi: 10.1002/art.40320. [Abstract Lundberg IE, Tjärnlund A, Bottai M, Werth VP, Pilkington C, de Visser M, Alfredsson L, Amato AA, Barohn RJ, Liang MH, Singh JA, Aggarwal R, Arnardottir S, Chinoy H, Cooper RG, Dankó K, Dimachkie MM, Feldman BM, Garcia-De La Torre I, Gordon P, Hayashi T, Katz JD, Kohsaka H, Lachenbruch PA, Lang BA, Li Y, Oddis CV, Olesinska M, Reed AM, Rutkowska-Sak L, Sanner H, Selva-O'Callaghan A, Song YW, Vencovsky J, Ytterberg SR, Miller FW, Rider LG; International Myositis Classification Criteria Project Consortium, the Euromyositis Register, and the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (UK and Ireland). 2017 European League Against Rheumatism/American College of Rheumatology Classification Criteria for Adult and Juvenile Idiopathic Inflammatory Myopathies and Their Major Subgroups. Arthritis Rheumatol. 2017 Dec;69(12):2271-2282. doi: 10.1002/art.40320.]
  3. Bottai M, Tjärnlund A, Santoni G, Werth VP, Pilkington C, de Visser M, Alfredsson L, Amato AA, Barohn RJ, Liang MH, Singh JA, Aggarwal R, Arnardottir S, Chinoy H, Cooper RG, Danko K, Dimachkie MM, Feldman BM, García-De La Torre I, Gordon P, Hayashi T, Katz JD, Kohsaka H, Lachenbruch PA, Lang BA, Li Y, Oddis CV, Olesinka M, Reed AM, Rutkowska-Sak L, Sanner H, Selva-O'Callaghan A, Wook Song Y, Vencovsky J, Ytterberg SR, Miller FW, Rider LG, Lundberg IE; International Myositis Classification Criteria Project consortium, the Euromyositis register and the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDRG) (UK and Ireland). EULAR/ACR classification criteria for adult and juvenile idiopathic inflammatory myopathies and their major subgroups: a methodology report. RMD Open. 2017 Nov 14;3(2):e000507. doi: 10.1136/rmdopen-2017-000507. eCollection 2017. [Abstract Bottai M, Tjärnlund A, Santoni G, Werth VP, Pilkington C, de Visser M, Alfredsson L, Amato AA, Barohn RJ, Liang MH, Singh JA, Aggarwal R, Arnardottir S, Chinoy H, Cooper RG, Danko K, Dimachkie MM, Feldman BM, García-De La Torre I, Gordon P, Hayashi T, Katz JD, Kohsaka H, Lachenbruch PA, Lang BA, Li Y, Oddis CV, Olesinka M, Reed AM, Rutkowska-Sak L, Sanner H, Selva-O'Callaghan A, Wook Song Y, Vencovsky J, Ytterberg SR, Miller FW, Rider LG, Lundberg IE; International Myositis Classification Criteria Project consortium, the Euromyositis register and the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDRG) (UK and Ireland). EULAR/ACR classification criteria for adult and juvenile idiopathic inflammatory myopathies and their major subgroups: a methodology report. RMD Open. 2017 Nov 14;3(2):e000507. doi: 10.1136/rmdopen-2017-000507. eCollection 2017.]

IMACS Project VII. Development of an Internationally Agreed Minimal Dataset for Juvenile Dermatomyositis (JDM) for Clinical and Research Use

Primary Objectives: 
To develop consensus on minimal elements to include in a JDM dataset to be used for clinical and research purposes.

Start Date: 2014
Completion Date: 2017

Lead Investigators:

Publications:

  1. McCann LJ, Pilkington CA, Huber AM, Ravelli A, Appelbe D, Kirkham JJ, Williamson PR, Aggarwal A, Christopher-Stine L, Constantin T, Feldman BM, Lundberg I, Maillard S, Mathiesen P, Murphy R, Pachman LM, Reed AM, Rider LG, van Royen-Kerkof A, Russo R, Spinty S, Wedderburn LR, Beresford MW. Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research. Ann Rheum Dis. 2018 Feb;77(2):241-250. doi: 10.1136/annrheumdis-2017-212141. Epub 2017 Oct 30. [Abstract McCann LJ, Pilkington CA, Huber AM, Ravelli A, Appelbe D, Kirkham JJ, Williamson PR, Aggarwal A, Christopher-Stine L, Constantin T, Feldman BM, Lundberg I, Maillard S, Mathiesen P, Murphy R, Pachman LM, Reed AM, Rider LG, van Royen-Kerkof A, Russo R, Spinty S, Wedderburn LR, Beresford MW. Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research. Ann Rheum Dis. 2018 Feb;77(2):241-250. doi: 10.1136/annrheumdis-2017-212141. Epub 2017 Oct 30.]
  2. McCann LJ, Kirkham JJ, Wedderburn LR, Pilkington C, Huber AM, Ravelli A, Appelbe D, Williamson PR, Beresford MW.  Development of an internationally agreed minimal dataset for juvenile dermatomyositis (JDM) for clinical and research use.  Trials. 2015 Jun 12;16:268. [Abstract McCann LJ, Kirkham JJ, Wedderburn LR, Pilkington C, Huber AM, Ravelli A, Appelbe D, Williamson PR, Beresford MW.  Development of an internationally agreed minimal dataset for juvenile dermatomyositis (JDM) for clinical and research use.  Trials. 2015 Jun 12;16:268.]
  3. McCann LJ, Arnold K, Pilkington CA, Huber AM, Ravelli A, Beard L, Beresford MW, Wedderburn LR. Developing a provisional, international Minimal Dataset for Juvenile Dermatomyositis: for use in clinical practice to inform research. Pediatr Rheumatol Online J. 2014 Jul 21;12:31. [Abstract McCann LJ, Arnold K, Pilkington CA, Huber AM, Ravelli A, Beard L, Beresford MW, Wedderburn LR. Developing a provisional, international Minimal Dataset for Juvenile Dermatomyositis: for use in clinical practice to inform research. Pediatr Rheumatol Online J. 2014 Jul 21;12:31.]
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