Patient Outcomes in Longitudinal Studies in RA Working Group

About

The goal of the OMERACT Patient Outcomes in Longitudinal Studies in RA group is to identify patient-centred long-term outcome domains for long-term studies in patients with rheumatoid arthritis (RA). Patient-centred outcomes are relevant to patients and essential to their well-being. We aim to develop a core set of patient-centred domains for longitudinal observational cohorts and registries collecting long-term data on the outcomes of patients with RA.

Current Stage in the OMERACT Process

The group has completed a Core Domain Set for long-term outcomes in rheumatoid arthritis and is moving toward community endorsement. Plans are underway to transition leadership for the next instrument selection phase.

Latest Update

Current Objectives and Focus Areas

Developing an e-module to present the POLOS OMERACT Core Domain Set to broader OMERACT community for endorsement.

Recent Milestones Achieved

Finalized the POLOS onion and core domain definitions
Upcoming Activities and Deliverables
Launch e-module for community viewing and voting following OMERACT 2025 conference

Additional Information

As the current working group leaders conclude their role following the endorsement of the core domain set for POLOS in RA, OMERACT will be looking to support a new team to lead the next phase focused on Instrument Selection. If you're interested in taking this important work forward, we encourage you to reach out.
CDS Roadmap

Meet the Team

catherine hill

Catherine Hill, Australia
Chair

Maria Suarez-Almazor

Maria Suarez-Almazor, USA
Chair

Loreto Carmona

Loreto Carmona, Spain
Chair

Diego Benavent

Diego Benavent, Spain
OMERACT Fellow

Cristiana Sieiro

Cristiana Sieiro Santos, UK
OMERACT Fellow

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Niti Goel, USA
Patient Research Partner

Recent Publications

  1. Benavent, Diego, et al. “Patient Outcomes in Longitudinal Observational Studies (POLOS) of Rheumatoid Arthritis: Determining the OMERACT Core Domain Set.” Seminars in Arthritis and Rheumatism, vol. 64, 152343, 2024, https://doi.org/10.1016/j.semarthrit.2023.152343.

  2. Negrón, José B., et al. “Patient Perspectives on Long-Term Outcomes in Rheumatoid Arthritis. A Qualitative Study from the OMERACT Patient Outcomes in Longitudinal Studies Working Group.” Seminars in Arthritis and Rheumatism, vol. 58, 152028, 2023, https://doi.org/10.1016/j.semarthrit.2022.152028.

  3. Bruera, Sebastian, et al. “Development of a Patient-Centered Core Domain Set for Prospective Observational Longitudinal Outcome Studies in Rheumatoid Arthritis: An OMERACT Initiative.” Seminars in Arthritis and Rheumatism, vol. 51, no. 5, 2021, pp. 1113–16, https://doi.org/10.1016/j.semarthrit.2021.08.003.

  4. Lopez‐Olivo, Maria A., et al. “Outcomes Reported in Prospective Long‐Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review.” Arthritis Care & Research (2010), vol. 73, no. 5, 2021, pp. 649–57, https://doi.org/10.1002/acr.24163.

  5. Lopez-Olivo MA, Negrón JB, Zogala RJ, et al. "Core Outcome Sets Specifically for Longterm Observational Studies: OMERACT Special Interest Group Update in Rheumatoid Arthritis." J Rheumatol. 2019;46(9):1164-1167. doi:10.3899/jrheum.181076

  6. Zamora, Natalia V., et al. “Critical Outcomes in Longitudinal Observational Studies and Registries in Patients with Rheumatoid Arthritis: An OMERACT Special Interest Group Report.” Journal of Rheumatology, vol. 44, no. 12, 2017, pp. 1894–98, https://doi.org/10.3899/jrheum.161108.

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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