Outcomes Reported in Prospective Long‐Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review

Objective Prospective long-term observational studies (LOS) in rheumatoid arthritis (RA) lack a core set of universally collected outcome measures, particularly patient-centered outcomes, precluding accurate comparisons across studies. Our aim was to identify measures and reported these Methods We conducted systematic review registries LOS patients with RA, searching ClinicalTrials.gov, the Agency for Healthcare Research Quality Registry Patient Registries, Google Scholar. The names acronyms were further searched Medline Embase databases retrieve published articles. Two independent reviewers undertook data collection, quality appraisal, extraction. Results identified 88 registries/LOS that met our eligibility criteria. These divided into 2 groups: disease-based (52 [59%]) therapy-based (36 [41%]). Methodologic reporting standards varied eligible For clinical disease activity recorded (100%) all LOS/registries. most commonly measure (86 [98%]) composite Disease Activity Score using 28 joints. Of outcomes collected, physical functioning frequently (75 [85%]) Health Assessment Questionnaire as used instrument within this domain. Other domains comparatively infrequently recorded: mental (29 [33%]), social (20 [23%]), health-related life (37 [42%]). Conclusion Most collect function. However, there is substantial heterogeneity collection relevant symptom burden ramifications RA.