The International Map of Axial Spondyloarthritis
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 the patient’s perspective.
Over 4,300 people from around the world have completed the survey and IMAS continues to expand with new countries participating from summer 2021. In the initial phase of IMAS, 2,846 people from 13 European countries completed the survey and you can explore these results in the ‘axSpA in numbers’ page.
IMAS brings together patients, patient organisations, clinicians and researchers from around the world to address the questions that matter the most to patients.
By generating and disseminating evidence about how people with axial spondyloarthritis (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.
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.
- Ensuring 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
- 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 organisations to build their own capacity in supporting people with axSpA.
Who is involved1,2?
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United States1,2
Recruiting participants currently
In partnership with:
Spondylitis Association of America (SAA)
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Brazil1,2
159 participants
In partnership with:
- Garce
- Grupal
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Canada1,2
542 participants
In partnership with:
Canadian Spondylitis Association (CSA)
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Spain1,2
680 participants
In partnership with:
Coordinadora Española de Asociaciones de Espondiloartritis (CEADE)
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United Kingdom1,2
Recruiting participants currently
In partnership with:
National Axial Spondyloarthritis Society (NASS)
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Turkey1,2
170 participants
In partnership with:
Ankilozan Spondilit Hasta Derneği (ASHAD)
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Sweden1,2
71 participants
In partnership with:
Reumatikerförbundet
-
Russia1,2
229 participants
In partnership with:
Ankylosing Spondylitis Society in Russia
-
South Africa1,2
Recruiting participants currently
In partnership with:
Axial Spondyloarthritis Association of South Africa
-
Taiwan1,2
112 participants
In partnership with:
Association of Ankylosing Spondylitis, R.O.C
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Belgium1,2
75 participants
In partnership with:
Arthrites, VVSA and Reumanet
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Colombia1,2
162 participants
In partnership with:
Fundación de Espondilitis Anquilosante en Colombia, FUNDARE
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France1,2
639 participants
In partnership with:
Association Française de Lutte Antirhumatismale (AFLAR)
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India1,2
Launching soon!
In partnership with:
- AntarDhwani
- Ankylosing Spondylitis Welfare Society
- Stand for AS
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Italy1,2
131 participants
In partnership with:
Associazione Nazionale Persone con Malattie Reumatologiche (APMAR)
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Lithuania1,2
Recruiting participants currently
In partnership with:
Bechterevo Liga Sergančiųjų Draugija
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Norway1,2
510 participants
In partnership with:
Spondyloartrittforbundet Norge (SPAFO)
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Philippines1,2
Recruiting participants currently
In partnership with:
Axial Spondyloarthritis Association of the Philippines (ASAPH)
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Slovenia1,2
83 participants
-
Germany1,2
77 participants
-
Switzerland1,2
80 participants
-
Austria1,2
84 participants
-
Netherlands1,2
106 participants
-
South Korea1,2
128 participants
-
Mexico1,2
Recruiting participants currently
-
Argentina1,2
Recruiting participants currently
-
Costa Rica1,2
Recruiting participants currently
axSpA in numbers1
Understanding the impact of axSpA on people’s lives through the IMAS
The data generated by IMAS demonstrates how living with axSpA can affect every part of a person’s life, from physical and emotional wellbeing, to the impact on education, work and relationships.
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Total number of participants in europe1
The following results are exclusively from the European dataset.
1,746 females (61.4%)1
1,100 males (38.7%)1
Age range:
18 – 85 years1
mean = 44 years1
Treatment goals
in axSpA1,2
4. Treatment goals in axspa
What do people living with axSpA care about most? Dive into the IMAS numbers
Only 1 in 3 people diagnosed with axSpA discuss their treatment goals with their doctor.
More people with axSpA should be included in their treatment decisions.
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Managing disease
- Reducing / managing pain
- Maintaining or improving mobility
- Achieving normalcy
- Working and maintaining wellness
- Improving the treatment and reducing the impact of the disease
- Finding a cure or healing from the disease
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Maintaining independence
- Exercising
- Remaining physically active
- Independent living
- Financial independence
But most importantly, people with axSpA want to decrease their worries for the future…
The disease progression of axSpA can have a devastating effect on both the 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 retain physical and financial independence without becoming a burden to others.
By delving deeper into these issues that people with axSpA experience in their daily lives, IMAS will continue to work towards better clinical pathways for people before, during and throughout treatment for axSpA, working with key global stakeholders for a better approach to the axSpA clinical pathway that puts the patient at the centre of every decision.