Development of a Core Set of Domains for Data Collection in Cohorts of Patients with Ankylosing Spondylitis Receiving Anti-Tumor Necrosis Factor-a Therapy.

Authors:Jane Zochling, Joachim Sieper, Désirée van der Heijde, Jürgen Braun
Language:ENG.
Date:8-5-2008
Journal:The Journal of rheumatology (0315-162X)
Release:J Rheumatol. 1 May 2008


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.

Copyright:The Journal of rheumatology

From the Menzies Research Institute, Hobart, Australia; Charité Hospital, Berlin, Germany; Leiden University Medical Center, Leiden, The Netherlands; and Ruhr University and Rheumazentrum-Ruhrgebiet, Herne, Germany.
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