Uveitis Registries - A Digital Tool for Patient Care, Education, Research, and Collaboration

Ocul Immunol Inflamm. 2023 Nov;31(9):1859-1869. doi: 10.1080/09273948.2022.2140062. Epub 2022 Nov 3.

Abstract

Purpose: Clinical registries are increasingly important in research and clinical advancement. This review explores and compares current uveitis registries and recommends future directions on how uveitis registries can complement one another for synergistic effect and benefit.

Methods: From a systematic search, 861 citations were screened for longitudinal, non-interventional, and multicenter uveitis-specific registries. Additional registries were identified via consultations with uveitis experts. Characteristics of all registries were analyzed and compared.

Results: Four registries were identified: Treatment Exit Options for Non-infectious Uveitis, AutoInflammatory Disease Alliance International Registry, Ocular Autoimmune Systemic Inflammatory Infectious Study, and Fight Uveitis Blindness!. Despite certain differences, these registries have the overarching goal of collecting large quantities of real-world, high-quality patient data to improve the understanding of uveitis.

Conclusion: The four uveitis registries share similar goals and collect clinical data from overlapping geographical regions. There is vast potential for collaboration, including data sharing to further augment datasets for analysis.

Keywords: AIDA; FUB; OASIS; TOFU; registry; uveitis.

Publication types

  • Review

MeSH terms

  • Eye
  • Eye Infections*
  • Humans
  • Multicenter Studies as Topic
  • Patient Care
  • Registries
  • Uveitis* / drug therapy
  • Uveitis* / therapy