KOBIO, the First Web-based Korean Biologics Registry Operated With a Unified Platform Among Distinct Disease Entities

Abstract

The KOrean College of Rheumatology BIOlogics and targeted therapy (KOBIO) registry is a nationwide observational cohort that captures detailed data on exposure of patients to biologic and targeted synthetic disease-modifying anti-rheumatic drugs (DMARDs). This registry was launched in December 2012 with an aim to prospectively investigate clinical manifestations and outcomes of patients with rheumatoid arthritis (RA), ankylosing spondylitis, and psoriatic arthritis who initiated a biologic or targeted synthetic DMARD or switched to another. Demographic data, disease activity, current treatment, adverse events, terms based on Medical Dictionary for Regulatory Activities, and so on are registered for patients who are then followed up annually in a web-based unified platform. The KOBIO registry also recruits and collects data of patients with RA on conventional DMARDs for comparison. As of today, more than 5,500 patients were enrolled from 47 academic and community Rheumatology centers across Korea. The KOBIO registry has evolved to become a powerful database for clinical research to improve clinical outcomes and quality of treatment.

Keywords: Ankylosing spondylitis; Biological products; Psoriatic arthritis; Registries; Rheumatoid arthritis.

Figure 1

Dashboard images of initial (A) and follow-up (B) registration forms.

Figure 2

Cumulative enrollment in the KOBIO registry overtime on December 2020. KOBIO: Korean College of Rheumatology Biologics and targeted therapy, RA: rheumatoid arthritis, AS: ankylosing spondylitis, PsA: psoriatic arthritis.

Figure 3

Schematic of developing the online version of MedDRA incorporated within KOBIO. MedDRA: Medical Dictionary for Regulatory Activities, KOBIO: Korean College of Rheumatology Biologics and targeted therapy, ASCII: American Standard Code for information interchange, UX: user experience, UI: user interface.