Myositis Working Group

About

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.

Current Stage in the OMERACT Process

The Myositis Working Group is completing instrument selection for its endorsed domains. PROMIS instruments are being integrated into clinical trials, with findings summarized in new publications.

Latest Update

OMERACT 2025 Conference Highlights
Fellow Poster: Our OMERACT Fellow, Ellen Romich, presented a poster summarizing the current state of our work, sparking excellent conversations about next steps and collaborations. 👉 View the poster here
Lightning Talk: In a rapid-fire session, our team shared an upcoming teaser of the Special Interest Group (SIG) session taking place during the conference. 👉 Watch the lightning talk here
Closing Plenary Talk: We were also featured in the Closing Plenary, where we highlighted the activities of the (SIG). 👉 Watch the presentation here
IS Roadmap (2)

Meet the Team

Lisa Christopher Stine

Lisa Christopher-Stine, USA
Chair

Helene

Helene Alexanderson, Sweden
Chair

Jin Park

Jin Park, USA
Chair

chris mecoli

Chris Mecoli, USA
Chair

Didem Saygin

Didem Saygin, USA
Emerging Leader

ellen.romich@pennmedicine.upenn.edu

Ellen Romich, USA
OMERACT Fellow

Ingrid de Groot

Ingrid de Groot, Netherlands
Patient Research Partner

Catherine s

Catherine Sarver, USA
Patient Research Partner

OMERACT Endorsed Core Domain Set for use in Clinical Trials/LOS in Myositis

OMERACT Onions with Instruments
Untitled design (2)

Recent Publications

  1. Romich, Ellen, et al. “Construct Validity of PROMIS Pain Interference, Fatigue, and Physical Function as Patient-Reported Outcomes in Adults with Idiopathic Inflammatory Myopathies: An International Study from the OMERACT Myositis Working Group.” Seminars in Arthritis and Rheumatism, vol. 68, 152534, 2024, https://doi.org/10.1016/j.semarthrit.2024.152534.

  2. Saygin, D., et al. “Responsiveness and Meaningful Thresholds of PROMIS Pain Interference, Fatigue, and Physical Function Forms in Adults with Idiopathic Inflammatory Myopathies: Report from the OMERACT Myositis Working Group.” Seminars in Arthritis and Rheumatism, vol. 64, 152339, 2024, https://doi.org/10.1016/j.semarthrit.2023.152339.

  3. Saygin, Didem, et al. “The Impact of Pain on Daily Activities in Patients with Idiopathic Inflammatory Myopathies: Report from the OMERACT Myositis Working Group.” Seminars in Arthritis and Rheumatism, vol. 67, 152476, 2024, https://doi.org/10.1016/j.semarthrit.2024.152476.

  4. DiRenzo, Dana, et al. “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.” Seminars in Arthritis and Rheumatism, vol. 58, 152111, 2023, https://doi.org/10.1016/j.semarthrit.2022.152111.

  5. Esfandiary, Tina, et al. “Assessing the Content Validity of Patient-Reported Outcome Measures in Adult Myositis: A Report from the OMERACT Myositis Working Group.” Seminars in Arthritis and Rheumatism, vol. 50, no. 5, 2020, pp. 943–48, https://doi.org/10.1016/j.semarthrit.2020.06.006.

  6. Regardt, Malin, et al. “OMERACT 2018 Modified Patient-Reported Outcome Domain Core Set in the Life Impact Area for Adult Idiopathic Inflammatory Myopathies.” Journal of Rheumatology, vol. 46, no. 10, 2019, pp. 1351–54, https://doi.org/10.3899/jrheum.181065.

  7. Park, Jin Kyun, et al. “Advancing the Development of Patient-Reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study.” Journal of Rheumatology, vol. 44, no. 11, 2017, pp. 1683–87, https://doi.org/10.3899/jrheum.161252.

New to OMERACT?

OMERACT Working Groups follow a structured, consensus-driven approach to developing Core Outcome Sets. Explore how this process unfolds and discover more about how OMERACT advances outcome measurement in rheumatology.
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