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IMACS Studies

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 these studies.

IMACS Research Projects (26KB)

Developing and validating core set measures of myositis disease activity and damage

Project Title: 
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: 
Lisa Rider 
Lisa Rider

Fred Miller 
Fred Miller

David Isenberg 
David Isenberg

Publications: 

Miller FW et al. Proposed preliminary core set measures for disease outcome assessment in adult and juvenile idiopathic inflammatory myopathies. Rheumatology, Oxford, 2001; 40(11):1262-73. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/11709610) ]

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 (http://www.ncbi.nlm.nih.gov/pubmed/15146430) ]

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 (http://www.ncbi.nlm.nih.gov/pubmed/12867580) ]

Rennebohm RM et al. Normal scores for nine maneuvers of the Childhood Myositis Assessment Scale. Arthritis Rheum. 2004; 51(3):365-70. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/15146430) ]

Huber AM et al. The Cutaneous Assessment Tool (CAT): Development and reliability in juvenile idiopathic inflammatory myopathy, Rheumatology, 2007; 46:1606-1611. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/17890275) ]

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 (http://www.ncbi.nlm.nih.gov/pubmed/12867580) ]

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 (http://www.ncbi.nlm.nih.gov/pubmed/18240194) ]

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 (http://www.ncbi.nlm.nih.gov/pubmed/18311761) ]

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 (http://www.ncbi.nlm.nih.gov/pubmed/19877055) ]

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 (http://www.ncbi.nlm.nih.gov/pubmed/20209035) ]

Dugan EM, Huber AM, Miller FW, and Rider LG. Photoessay of the idiopathic inflammatory myopathies. Dermatology Online Journal. 2009. 15 (2):1. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/19336018) ]

Rider LG et al. Validation of manual muscle testing and a subset of eight muscles for adult and juvenile idiopathic inflammatory myopathies. Arthritis Care Res. 2010;62:465-72. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/20391500) ]

Rider LG et. al. 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 and Research. 2011 Nov;63 Suppl 11:S118-S157. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/22588740) ]

 

Determining clinically meaningful change in core set activity measures and developing preliminary definitions of improvement

Project Title: 
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: 
Lisa Rider 
Lisa Rider

Fred Miller 
Fred Miller

Ann Reed 
Reed.Ann18@mayo.edu

Publications: 

Rider LG et al. International consensus on preliminary definitions of improvement in adult and juvenile myositis. Arthritis Rheum. 2004; 50(6):2281-90. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/15248228) ]

Rider LG et al., for the International Myositis Assessment and Clinical Studies (IMACS) Group. Workshop report: Defining clinical improvement in adult and juvenile myositis. J Rheumatol. 2003; 30: 603-617. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/12610824) ]

 

Consensus guidelines for the design and conduct of myositis clinical trials

Project Title: 
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: 

Chet Oddis
cvo5@pitt.edu

Lisa Rider 
Lisa Rider

Fred Miller 
Fred Miller

Ann Reed 
Reed.Ann18@mayo.edu

Publications: 

Oddis CV et al. International consensus guidelines for therapeutic trials in the idiopathic inflammatory myopathies, Arthritis Rheum. 2005; 52(9):2607-2615. [Abstract (http://www.ncbi.nlm.nih.gov/pubmed/16142757) ]

 

IMACS Outcomes Data Repository

Project Title: 
IMACS Outcomes Data Repository

Primary Objectives: 
Develop a repository of databases of myositis natural history studies and therapeutic trials that have all collected the IMACS disease activity and damage core set measures, as well as core demographic and clinical data, for use by myositis researchers.

Start Date: 2004
Completion Date:
Ongoing

Lead Investigators: 
Lisa Rider
Lisa Rider

Fred Miller
Fred Miller

Publications: 
None

 

International Myositis Classification Criteria Project

Project Title: 
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.

Start Date: 2004
Completion Date:
Ongoing

Lead Investigators: 
Ingrid Lundberg
Ingrid.Lundberg@ki.se

Publications: 
None

 

Dyslipidemia in Myositis Survey

Project Title: 
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: 
Christina ccharles@mednet.ucla.edu Charles-Schoeman

Publications: 

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 (http://www.ncbi.nlm.nih.gov/pubmed/22526479) ]

 

Standards of Treatment for Adults with Myositis and different Phenotypes - STAMP

Project Title: 
Standards of Treatment for Adults with Myositis and different Phenotypes - STAMP

Primary Objectives: 
To define standard approaches to treat myositis phenotypes

Start Date: 2011
Completion Date: Ongoing

Lead Investigators: 
Lisa Christopher-Stine (PI)
lchrist4@jhmi.edu

Hector Chinoy (PI)
Hector.Chinoy@srft.nhs.uk

Neil McHugh
Neil.McHugh@rnhrd.nhs.uk

Sarah Tansley
sarah.tansley@rnhrd.nhs.uk

Lyubo Dourmishev
l_dourmishev@yahoo.com

Publications: 
None

 

Defining Myositis Phenotypes and Therapies that Achieve Complete Clinical Responses and Remission

Project Title: 
Defining Myositis Phenotypes and Therapies that Achieve Complete Clinical Responses and Remission

Primary Objectives: 
To define which therapies are useful in which phenotypes to achieve complete clinical responses and remission

Start Date: 2011
Completion Date: Ongoing

Lead Investigators: 
Mazen Dimachkie
mdimachkie@kumc.edu

Ann Reed
Reed.Ann18@mayo.edu

Chet Oddis
cvo5@pitt.edu

Hector Chinoy
Hector.Chinoy@srft.nhs.uk

Rohit Aggarwal
aggarwalr@upmc.edu

David Isenberg
David Isenberg

Ingrid Lundberg
Ingrid.Lundberg@ki.se

Publications: 
None

 

ACR-EULAR Project to Revise the Definition of Improvement and Major Clinical Response for Adult and Juvenile Dermatomyositis and Adult Polymyositis

Project Title: 
ACR-EULAR Project to Revise the Definition of Improvement and Major Clinical Response for Adult and Juvenile Dermatomyositis and Adult Polymyositis

Primary Objectives: 
To develop new response criteria for adult and juvenile dermatomyositis and polymyositis, including criteria for minimal and major response for use as endpoints in myositis therapeutic trials.

Start Date: 2012
Completion Date: 2015

Lead Investigators: 
Lisa Rider
Lisa Rider

Nicola Ruperto
nicolaruperto@ospedale-gaslini.ge.it

Fred Miller
Fred Miller

Jiri Vencovsky
venc@revma.cz

Rohit Aggarwal
aggarwalr@upmc.edu

Publications: 
None

 

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