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
The OMERACT POLOS-RA Working Group is working on a Delphi survey to determine which patient-centered outcome measures are appropriate for longitudinal cohort studies in RA. As is customary with OMERACT we are asking rheumatologists, other health professionals, researchers, and patients around the world to complete the survey (only takes 10 minutes). We would greatly appreciate it if you could help us by completing the survey so we can have as many opinions and preferences as possible from healthcare providers and patients. It's an online survey that will take you about 10 minutes to complete.
- The survey only asks about what you think is important for researchers to measure in studies of patients with RA. You will not be asked at any time personal questions about your health.
- You are of course under no obligation to complete the survey. The results are anonymous and we will not have access to any individual data or responses, only aggregated data.
Please, follow the link below to register and complete the survey. https://delphimanager.liv.ac.uk/POLOS/Delphi
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:
Clifton O Bingham III
Ingrid de Groot
Maarten de Wit
Sabrina Mai Nielsen
Win Min Oo