Abstract
Objective
To create a core set of measurement concepts for use in the creation and maintenance of anti-tumor necrosis factor-α 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.
Key Indexing Terms:Footnotes
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J. Zochling, MBBS, PhD, Research Fellow, Menzies Research Institute; J. Sieper, MD, Professor of Rheumatology, Charité Hospital Berlin; D. van der Heijde, MD, Professor of Rheumatology, Leiden University Medical Center; J. Braun, MD, Professor of Rheumatology, Ruhr University, Rheumazentrum-Ruhrgebiet.
- Accepted for publication January 7, 2008.
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