About the Myositis Working Group
Idiopathic inflammatory myopathies (IIM) are rare inflammatory autoimmune diseases, commonly with primary involvement of the skeletal muscle. IIM are multi-system diseases often extending beyond muscle weakness and may involve the lungs, joints, skin, and the gastrointestinal tract.
The aim of the Outcome Measures in Rheumatology (OMERACT) Myositis group is to identify core domains and instruments that reflect the life impact area in IIM, with strong patient participation.
Helene Alexanderson
Co-Chair
Jin Park
Co-Chair
Chris Mecoli
Co-Chair
Lisa Christopher-Stine
Co-Chair
Dana Direnzo
Fellow
Didem Saygin
Fellow
Ingrid de Groot
Patient Research Partner
Catherine Sarver
Patient Research Partner
OMERACT Endorsed Core Domain Set for use in Clinical Trials/LOS in Myositis
Working Group Publications
Reliability and validity of PROMIS physical function, pain interference, and fatigue as patient reported outcome measures in adult idiopathic inflammatory myopathies: International study from the OMERACT myositis working group
Assessing the content validity of patient-reported outcome measures in adult myositis: A report from the OMERACT myositis working group
Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study
OMERACT 2018 Modified Patient Reported Outcome Domain Core Set In The Life Impact Area For Adult Idiopathic Inflammatory Myopathies
Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study
Patients’ Experience of Myositis and Further Validation of a Myositis-specific PROM – Moving Forward to Establish Core Domains and Expanding Patient Input on Clinical Assessment in Myositis. Report from OMERACT 12
Patient-reported Outcomes and Adult Patients' Disease Experience in the Idiopathic Inflammatory Myopathies. Report from the OMERACT 11 Myositis Special Interest Group
Working Group Members:
