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The International Map of
Axial Spondyloarthritis

1. About imas

The International Map of Axial Spondyloarthritis (IMAS) is a survey of people diagnosed with axial spondyloarthritis (axSpA); it assesses the impact and burden of axSpA from a patient’s perspective.

5557 people from 27 countries around the world completed the IMAS survey between 2017 and 2022.1 You can explore these results in the ‘axSpA in numbers’ page.

IMAS brings together patients, patient organisations, clinicians, and researchers from across the globe to address the questions that matter the 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.

ASIF has published a report on the IMAS findings. Our report, ‘The burden of axial spondyloarthritis: a global patient perspective’ reveals the reality of living with axSpA and demonstrates the numerous ways that people are impacted by the disease.

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IMAS Vision

  • Educate, support and empower 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.

IMAS Values

  • Ensure that the quality of life and needs of people living with axSpA are central to everything that we do.
  • Strive to gain a holistic understanding of the experiences of patients through various disciplines and multiple stakeholders united by a common interest.
  • Use the evidence-based information and scientific rigour to guide any type of action.
  • Support patient organisations in their work by using 
the IMAS data to provide evidence-based information 
and tools.

Who is involved?1-3

2. Who is involved
Select a hotspot from the map or use the dropdown menu
Select a country
Select country
Argentina
Austria
Belgium
Brazil
Canada
Colombia
Costa Rica
France
Germany
India
Italy
Lithuania
Mexico
Netherlands
Norway
Philippines
Russia
Slovenia
Switzerland
South Korea
Spain
Sweden
South Africa
Turkey
Taiwan
United States
United Kingdom
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  • #

    United States

    228 participants

    In partnership with:

    Spondylitis Association of America (SAA)

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    Brazil

    159 participants

    In partnership with:

    • Grupo de Apoio aos Pacientes Reumáticos do Ceará
    • Grupal
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    Canada

    542 participants

    In partnership with:

    Canadian Spondylitis Association (CSA)

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    Spain

    680 participants

    In partnership with:

    Coordinadora Española de Asociaciones de Espondiloartritis (CEADE)

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  • #

    United Kingdom

    374 participants

    In partnership with:

    National Axial Spondyloarthritis Society (NASS)

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    Turkey

    289 participants

    In partnership with:

    Ankilozan Spondilit Hasta Derneği (ASHAD)

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    Sweden

    71 participants

    In partnership with:

    Reumatikerförbundet

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    Russia

    233 participants

    In partnership with:

    Ankylosing Spondylitis Society in Russia

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    South Africa

    146 participants

    In partnership with:

    Axial Spondyloarthritis Association of South Africa

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    Taiwan

    112 participants

    In partnership with:

    Association of Ankylosing Spondylitis, R.O.C

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    Belgium

    76 participants

    In partnership with:

    Arthrites, VVSA and Reumanet

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    Colombia

    164 participants

    In partnership with:

    Fundación de Espondilitis Anquilosante en Colombia, FUNDARE

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    France

    638 participants

    In partnership with:

    Association Française de Lutte Antirhumatismale (AFLAR)

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    India

    232 participants

    In partnership with:

    • Antardhwani
    • Ankylosing Spondylitis Welfare Society
    • Stand for AS
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    Italy

    134 participants

    In partnership with:

    Associazione Nazionale Persone con Malattie Reumatologiche (APMAR)

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    Lithuania

    59 participants
    In partnership with:

    Bechterevo Liga Sergančiųjų Draugija

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  • #

    Norway

    509 participants

    In partnership with:

    Spondyloartrittforbundet Norge (SPAFO)

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    Philippines

    128 participants

    In partnership with:

    Axial Spondyloarthritis Association of the Philippines (ASAPh)

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    Slovenia

    83 participants

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    Germany

    78 participants

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    Switzerland

    80 participants

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    Austria

    82 participants

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    Netherlands

    107 participants

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    Korea

    128 participants

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    Mexico

    60 participants

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    Argentina

    115 participants

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    Costa Rica

    50 participants

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axSpA in numbers1,2

3. axspa in numbers

Understanding the impact of axSpA on people’s lives 
The data generated by IMAS demonstrates how living with axSpA can affect almost every part of a person’s life, from physical and emotional wellbeing to decisions about education, work and relationships.

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Total number of participants

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55.4% females (n=3080)

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44.6% males (n=2475)

2 responses did not indicate
male or female

Age range:
18 – 87 years

mean = 44 years

Working towards improvements

4. working towards
improvements

AxSpA can have a devastating effect on both a person’s physical and mental wellbeing. People with axSpA report mental health concerns as a result of being worried about the lifelong effects of their disease, including their ability to work, be physically active and their ability to retain physical and financial independence without becoming a burden to others.

By delving deeper into these daily issues, the IMAS team will continue to work towards better outcomes for people with axSpA, supporting patient organisations and working with key stakeholders for a better approach to axSpA policy and treatment. We aim to put the patient at the centre of every decision.

Our global IMAS report clearly demonstrates the challenges and unmet needs of people living with axSpA. As such, we call on policymakers and healthcare professionals to:

Policymakers
  • Undertake a country-level assessment, working with patient groups and clinical experts, using IMAS data to better understand the needs of people with axSpA. Drawing on the outputs of the assessment, identify measurable actions to address key challenges, and regularly review progress.
  • Prioritise early and accurate axSpA diagnosis through reliable referral systems that promptly transition patients from primary care to an appropriate specialist (ideally, a rheumatologist), with the aim of avoiding delays in diagnosis that often contribute to poorer long term health outcomes and higher social and healthcare system costs.
  • Actively promote multidisciplinary care coordinated by an appropriate specialist and supported by relevant physical and mental health specialists, with a focus on ensuring optimal treatment and outcomes.
  • Work with employers’ and patients’ groups to define solutions that enable people with axSpA to access and remain part of the workforce.
Healthcare professionals
  • Educate primary care health professionals to recognise signs and symptoms of axSpA and to facilitate appropriate and timely referral to an appropriate specialist (ideally a rheumatologist).
  • Increase awareness and recognition of the signs and symptoms of axSpA amongst all healthcare professionals that may see undiagnosed people with symptoms. This includes physiotherapists, orthopaedic doctors and any specialists that treat associated manifestations of axSpA, such as ophthalmologists, dermatologists and gastroenterologists.
  • Ensure that people with axSpA have co-developed, individually tailored and regularly reviewed care plans in place – coordinated by an appropriate specialist.
  • Tailor individual care plans to maximise long-term quality of life, recognising an individual’s treatment goals and their physical, psychological, and socioeconomic needs.
  • Deliver education and training initiatives that help to identify patients requiring specific mental health support and ensure access to appropriate care is available when needed.

Stay connected

6. Stay connected

The IMAS global data is being used around the world to support patients and patient organisations. We are continuing to communicate the reality of living with axSpA and invite you to stay connected with this work.

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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

Global collaboration

With patient organisations and healthcare professionals

As of 2 January 2024, IMAS is owned solely by ASIF, following an in-kind donation of the project by Novartis Pharma AG

References:
  1. Garrido-Cumbrera M, Poddubnyy D, Sommerfleck F, et al. POS0298 THE INTERNATIONAL MAP OF AXIAL SPONDYLOARTHRITIS (IMAS). RESULTS FROM THE PERSPECTIVE OF 5,557 PATIENTS FROM 27 COUNTRIES AROUND THE WORLD. Annals of the Rheumatic Diseases 2023;82:391-392.
  2. The burden of axial spondyloarthritis: a global patient perspective, January 2024; Axial Spondyloarthritis International Federation. https://asif.info/imas-global-report/
  3. ASIF data on file
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