J Rheum Dis.  2021 Oct;28(4):176-182. 10.4078/jrd.2021.28.4.176.

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

Affiliations
  • 1Department of Internal Medicine, Chungnam National University College of Medicine, Daejeon, Korea
  • 2Division of Rheumatology, Department of Internal Medicine, Bucheon St. Mary's Hospital, College of Medicine, The Catholic University of Korea, Seoul, Korea
  • 3Division of Rheumatology, Department of Internal Medicine, Korea University Ansan Hospital, Ansan, Korea
  • 4Division of Rheumatology, Department of Internal Medicine, Soonchunhyang University Bucheon Hospital, Bucheon, Korea
  • 5Division of Rheumatology, Department of Internal Medicine, Seoul St. Mary's Hospital, College of Medicine, The Catholic University of Korea, Seoul, Korea
  • 6Division of Rheumatology, Department of Internal Medicine, Daegu Catholic University School of Medicine, Daegu, Korea
  • 7Department of Rheumatology, Hanyang University Hospital for Rheumatic Diseases, Seoul, Korea
  • 8Department of Medicine, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Korea
  • 9Department of Internal Medicine, Wonkwang University Hospital, Iksan, Korea
  • 10Department of Internal Medicine, Kyungpook National University School of Medicine, Daegu, Korea
  • 11Division of Rheumatology, Department of Internal Medicine, Yonsei University College of Medicine, Seoul, Korea
  • 12Department of Rheumatology, Chonnam National University Hospital, Gwangju, Korea
  • 13Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, Korea
  • 14Department of Rheumatology, Ajou University School of Medicine, Suwon, Korea
  • 15Division of Rheumatology, Department of Internal Medicine, Seoul Metropolitan Government-Seoul National University Boramae Medical Center, Seoul, Korea

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.

Keyword

Registries; Biological products; Rheumatoid arthritis; Ankylosing spondylitis; Psoriatic arthritis

Figure

  • 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.


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