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The International Map of Axial Spondyloarthritis

1. ABOUT

The IMAS initiative brings together patients, patient organizations, clinicians and researchers from around the world to address the questions that matter most to patients.

By generating and disseminating evidence about how people with axSpA experience their disease physically, psychologically and socially, IMAS aims to raise the voice of the axSpA community, ensuring patients around the world are empowered to live happy and well.

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26 average age of symptom onset
7 years average for a diagnosis
2 years further delay in female diagnosis
61% at risk of psychological distress

[Garrido-Cumbrera, M., Poddubnyy, D., Gossec, L. et al. The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries. Curr Rheumatol Rep 21, 19 (2019). https://doi.org/10.1007/s11926-019-0819-8]

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IMAS Vision

  • Educating, supporting and empowering people living with axSpA by showing them, through the data generated, that they are not alone in their disease.
  • Ensure that the axSpA patient perspective is integrated into health policy and clinical decision-making to improve the quality of life and wellbeing of people with axSpA around the world.
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IMAS Values

  • Ensuring that the quality of life and needs of people living with axSpA are central to everything that we do.
  • Striving to gain a holistic understanding of the situation of patients utilising various disciplines and multiple stakeholders united by a common interest.
  • Accept the importance of evidence-based information and the precepts of science in axSpA to guide any type of action.
  • Expanding the use of data to empower patient organizations to build their own capacity in supporting people with axSpA.

Who is involved?

2. Who is involved
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> 4,000 respondents to date and counting!

IMAS publications

3. Imas Publications

  • Atlas of axial spondyloarthritis in Spain 2017: Study design and population

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  • The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries

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  • Diagnostic Delay and Associated Factors in Axial Spondyloarthritis across Europe. Results from the European Map of Axial Spondyloarthritis Survey

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  • Identification of parameters associated with a diagnostic delay in Axial Spondyloarthritis: results from the European map of Axial Spondyloarthritis (EMAS)

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  • The path of a patient with axial Spondyloarthritis to diagnosis in Russia, data from the EMAS survey

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  • Impact of a training program and early referral on diagnostic delay in patients with Axial Spondyloarthritis: results from the Spanish atlas

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  • Mental health disorders in patients with Axial Spondyloarthritis: increasing our understanding of the disease. results from the Atlas-2017

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  • Mental Health in Patients with Axial Spondyloarthritis: Increasing Our Understanding of the Disease. Results from the Spanish Atlas

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  • Psychological Distress in Patients with Axial Spondyloarthritis in Europe. Results from the European Map of Axial Spondyloarthritis Survey

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  • The European map of Axial Spondyloarthritis (EMAS) – living with the condition

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  • Hopes and fears of patients with Axial Spondyloarthritis in Spain. The value of patient opinion: results from the Spanish Atlas

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  • Patient-reported attitudes towards Axial Spondyloarthritis: results from the EMAS survey

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  • Does Belonging to a Patient Association Is of Help for Patients with Axial Spondyloarthritis? Results from the Atlas Survey

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  • Characterizing the impact of Axial Spondyloarthritis on daily life: gender and patientreported outcomes associated with functional limitation in Canada. Results from the IMAS survey

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  • The impact of Axial Spondyloarthritis on patients’ sexual life: results from the European map of Axial Spondyloarthritis (EMAS)

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  • Onset of Axial Spondyloarthritis repercussions on patients’ social and family life: results from the European map of Axial Spondyloarthritis (EMAS)

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  • Impact of Axspa on working life: results from 233 patients of the Russian Federation participating in the European map of Axial Spondyloarthirtis (EMAS)

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  • The economic burden of Ankylosing Spondylitis in Spain. Results of the Spanish Atlas 2017

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  • Comparative analysis of patient-reported outcomes among employed and unemployed patients with Axial Spondyloarthritis. results of the Spanish Atlas 2017

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  • Impact of Axial Spondyloarthritis on patients’ professional life: results from the online survey EMAS of 638 French patients

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  • Impact of Axial Spondyoarthritis (AXSPA) on social and family life: results of the EMAS survey of 638 patients in 2018

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  • The value of belonging to patients’ association for Axial Spondyloarthritis: results from the atlas-2017

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  • Patient-reported impact of Axial Spondyloarthritis on working life: results from the EMAS survey

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  • Quality of life improvement in patients with Axial Spondyloarthritis treated with NSAIDS and biological therapy from the patient’s perspective: results from the atlas-2017

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  • Factors associated with use of biological therapies for Axial Spondyloarthritis in Canada. Results from the IMAS survey.

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  • Gender differences in patient journey to diagnosis and patient-reported outcomes: results from the European map of Axial Spondyloarthritis (EMAS)

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  • A benchmarking study evaluating the burden of Axial Spondyloarthritis in Spain compared with the rest of European countries. results of the Spanish ATLAS and EMAS studies.

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  • Gender differences in patients with Axial Spondyloarthritis: results from the ATLAS-2017

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  • Is obesity a factor of poor outcome in Spondyloarthritis? An analysis of 638 patients

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  • Obesity and associated factors in Norwegian Axial Spondyloarthritis patients. Results from the European map of Axial spondyloarthritis survey

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  • Association between smoking with spinal level of stiffness and functional limitation in patients with Axial Spondyloarthritis: results from the Spanish atlas

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Stay connected

4. Stay connected

IMAS is continuing to expand, reaching new countries and more respondents around the world! We invite you to stay connected as we develop tools to support patients and continue on our quest to communicate the story of people living with axSpA.

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“My goals are to be able to live normally, that society would be conscious and be aware of the problems people with axSpA face”

IMAS participant

IMAS partners

GLDEIM/AIN457A/1418 Date of Prep: June 2020

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