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Patient registries 

Patient registries
Patient registries

Elisabeth Lie

, Tore Kristian Kvien

, and Mikkel Østergaard

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date: 23 September 2020

Patient registries can be either disease-based or medication-based, and have a wide range of objectives, such as describing the natural history of disease, determining clinical effectiveness or cost-effectiveness of treatments, safety monitoring, and measuring quality of care. This chapter describes some of the major disease-based and medication-based registries in axial spondyloarthritis, including several so-called biologics registries, which were established in many European countries as well as in other parts of the world following the introduction of the first tumour necrosis factor (TNF) inhibitors in 1999. The main results from registry-based research in axial spondyloarthritis are reviewed, covering areas such as epidemiology, genetics, effectiveness of TNF inhibitor treatment and switching, predictors of TNF inhibitor response and retention, and safety of TNF inhibitors. The current and future role of patient registries within epidemiology, effectiveness research, and surveillance of new therapies in axial spondyloarthritis are discussed.

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