Axial spondyloarthritis (axSpA), a chronic inflammatory condition that encompasses radiographic (also known as ankylosing spondylitis [AS]) and non-radiographic (nr-axSpA) forms of the disease (Rudwaleit et al. 2009), can lead to chronic pain, structural damage, and disability. While understanding of the pathophysiology of axSpA and its management (classification, diagnosis, monitoring, and treatment) has increased over recent years (Sieper and Poddubnyy 2017), still relatively little is known about the disease from the perspective of the patient. Further research efforts are required to better understand the patient journey to diagnosis, the functional limitations associated with living with axSpA, and its effects on work productivity, quality of life, and psychological well-being (Garrido-Cumbrera et al. 2017).

The International Map of Axial Spondyloarthritis (IMAS) European project, a collaboration between the Health & Territory Research (HTR) group of the University of Seville, the Axial Spondyloarthritis International Federation (ASIF), the Spanish Federation of Spondyloarthritis Associations (CEADE), a steering committee composed of patient representatives and internationally recognized rheumatologists, psychologists, and physiotherapists specialized in the field of axSpA, and Novartis, was conceived to address these unmet needs (Fig. 1.1) (Garrido-Cumbrera et al. 2019a).

Fig. 1.1
figure 1

Overview of the IMAS European project, including the key stakeholders and participating countries. IMAS International Map of Axial Spondyloarthritis

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IMAS has an overarching aim of expanding our knowledge of axSpA to raise awareness of the impact of the disease on patients. The hope is that the data gathered will help inform long-term plans and treatment goals to ultimately improve quality of life and optimize clinical outcomes for patients, while fostering closer relationships between patient organizations, healthcare professionals (HCPs), and policy makers across Europe.

As part of the IMAS European project, a detailed questionnaire was conducted to gather data from patients with axSpA across 12 European countries: Austria, Belgium, France, Germany, Italy, the Netherlands, Norway, Slovenia, Sweden, Switzerland, Russia, and the UK. In 8 of the 12 participating countries (all except Austria, Belgium, Germany, and the UK), country-specific steering committees supported local interpretation and dissemination of the data. The survey results provide a snapshot of the current status of axSpA across Europe and build upon the pilot questionnaire conducted as part of the Atlas of Ankylosing Spondylitis in Spain 2017 (Garrido-Cumbrera et al. 2019b), the data from which were added to the IMAS database retrospectively. Since its publication, the Atlas of axSpA in Spain has been used to support discussions with the Spanish health authorities (Autonomous Communities of Madrid, Catalonia, Andalusia, Basque Country and Castille La-Mancha) to put axSpA on the health policy agenda and implement solutions at the national level that improve patients’ health.

This International Atlas of Axial Spondyloarthritis 2020 presents the key data from the IMAS questionnaire. The results are arranged thematically and have been critically analyzed, reviewed, and interpreted by the IMAS expert steering committee.