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Research ArticleArticle

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

JANE ZOCHLING, JOACHIM SIEPER, DÉSIRÉE van der HEIJDE, JÜRGEN BRAUN and on behalf of the Assessment in Ankylosing Spondylitis International Working Group
The Journal of Rheumatology June 2008, 35 (6) 1079-1082;
JANE ZOCHLING
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JOACHIM SIEPER
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DÉSIRÉE van der HEIJDE
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JÜRGEN BRAUN
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  • For correspondence: j.braun@rheumazentrum-ruhrgebiet.de
on behalf of the Assessment in Ankylosing Spondylitis International Working Group
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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:
  • ANKYLOSING SPONDYLITIS
  • TUMOR NECROSIS FACTOR-α INHIBITORS
  • REGISTRIES

Footnotes

  • 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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The Journal of Rheumatology
Vol. 35, Issue 6
1 Jun 2008
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Development of a Core Set of Domains for Data Collection in Cohorts of Patients with Ankylosing Spondylitis Receiving Anti-Tumor Necrosis Factor-α Therapy
JANE ZOCHLING, JOACHIM SIEPER, DÉSIRÉE van der HEIJDE, JÜRGEN BRAUN, on behalf of the Assessment in Ankylosing Spondylitis International Working Group
The Journal of Rheumatology Jun 2008, 35 (6) 1079-1082;

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Development of a Core Set of Domains for Data Collection in Cohorts of Patients with Ankylosing Spondylitis Receiving Anti-Tumor Necrosis Factor-α Therapy
JANE ZOCHLING, JOACHIM SIEPER, DÉSIRÉE van der HEIJDE, JÜRGEN BRAUN, on behalf of the Assessment in Ankylosing Spondylitis International Working Group
The Journal of Rheumatology Jun 2008, 35 (6) 1079-1082;
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