Development of a core set of domains for data collection in cohorts of patients with ankylosing spondylitis receiving anti-tumor necrosis factor-alpha therapy

J Rheumatol. 2008 Jun;35(6):1079-82. Epub 2008 May 1.

Abstract

Objective: To create a core set of measurement concepts for use in the creation and maintenance of anti-tumor necrosis factor-alpha patient registries in ankylosing spondylitis (AS).

Methods: A Delphi-based approach was used to identify elements that best identify a patient's clinical state, disease progression, and potential drug-related toxicities. Decision-making was based on systematic literature reviews and clinical experience and expertise.

Results: A core set of measurement domains was defined including disease activity and physical function outcomes. Comparison with domains used in existing AS registries showed excellent agreement with current practice.

Conclusion: This core set is a basis for data collection across AS populations.

MeSH terms

  • Delphi Technique*
  • Demography
  • Humans
  • Registries*
  • Severity of Illness Index
  • Spondylitis, Ankylosing / drug therapy
  • Spondylitis, Ankylosing / epidemiology*
  • Tumor Necrosis Factor-alpha / antagonists & inhibitors

Substances

  • Tumor Necrosis Factor-alpha