About the Patient Outcomes in Longitudinal Studies in RA Working Group
The goal of the OMERACT Patient Outcomes in Longitudinal Studies in RA group is to identify patient-centered long-term outcome domains and sub-domains for long-term studies in patients with rheumatic diseases. As a first step, the POLOS-RA group is addressing outcomes for rheumatoid arthritis (RA). Patient-centered outcomes are those which are relevant to patients and are essential to their well-being. We aim to develop a core set of patient-centered domains and subdomains for longitudinal observational cohorts and registries collecting long-term data on the outcomes of patients with RA.
The steps proposed are:
1) systematic review of existing registries and ongoing cohort studies;
2) qualitative studies to obtain the views and perception of patients with RA;
3) survey of stakeholders (patients, caregivers, clinicians and researchers) to rank and prioritize initial sets of domains and subdomains; and
4) final selection of domains using Delphi methods

Loreto Carmona
Co-Chair

Catherine Hill
Co-Chair

Maria Suarez-Almazor
Co-Chair
OMERACT 2020 Virtual SIG Session: Patient Outcomes in Longitudinal
Working Group Publications
Development of a patient-centered core domain set for prospective observational longitudinal outcome studies in rheumatoid arthritis: an OMERACT initiative
Core Outcome Sets Specifically for Longterm Observational Studies: OMERACT Special Interest Group Update in Rheumatoid Arthritis
Critical Outcomes in Longitudinal Observational Studies and Registries in Patients with Rheumatoid Arthritis: An OMERACT Special Interest Group Report
Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients with Rheumatoid Arthritis Worldwide: An OMERACT Systematic Review
Working Group Members:
Maria Suarez-Almazor
Robin Christensen
Lyn March
Loreto Carmona
Karla Criner
Jeffrey Curtis
Niti Goel
Max Yates
Grayson Schultz
Catherine Hill
Laura Gonzalez-Lopez
Francesa Ingegnoli
Louise Klokker
Amye Leong
Maria Lopez-Olivo
Lyn March
Jose Negron
Susanna Proudman
Deb Constien
Noreen Nasir
Bev Shea
Lee Simon
Vibeke Strand
Peter Tugwell
Tiffany Westrich-Robertson
Natalia Zamora
Richard Zogala
Sebastian Bruera
Allyson Jones