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

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.