A paradigm shift in studies based on rheumatoid arthritis clinical registries

Abstract

Clinical research is the study of aspects of patient health or illness that are closely related to clinical practice. In the late 20th and early 21th century, outcomes for patients with rheumatoid arthritis (RA) improved dramatically due to breakthroughs in new drugs. Patient-reported outcome measures now play a significant role in the drug development process as study endpoints in clinical trials of new therapies, and this has led to increased interest in the patient's perspective, drug safety and treatment outcomes in clinical practice. In accordance with these needs, many prospective cohorts for RA patients and registries of biologic disease modifying anti-rheumatic drugs have been actively conducted in the United States and European and Asian countries. A gradual shift is taking place in the major outcomes of clinical research using these prospective cohorts and registries. This article will introduce representative registries for RA in each country set up in the early 2000s and will discuss future perspectives in clinical research on RA patients using such clinical registries.

Keywords: Arthritis, rheumatoid; Big data; Cohort studies; Patients reported outcomes; Registries.

Figure 1.

Chronologic changes of study issues using representative rheumatoid arthritis (RA) cohorts and registries including Consortium of Rheumatology Researchers of North America (CORRONA), Institute of Rheumatology and Rheumatoid Arthritis of Tokyo Women's Medical University (IORRA), Korean Observational Study Network for Arthritis (KORONA), British Society for Rheumatology Biologics Register (BSRBR), nationwide registry of biological therapies in Denmark (DANBIO), and Korean nationwide Biologics (KOBIO). ^aOthers: description of the database, descriptive or validation study, methodologic issues, economic analysis, medical accessibility, or pathogenesis, etc.