IMAS Archives

American College of Rheumatology

Annual American College of Rheumatology annual meeting (ACR Convergence) 2024 took place November 14–19 in Washington, D.C.ASIF used ACR to continue dissemination of the International Map of Axial Spondyloarthritis (IMAS) findings. Drs Victoria Navarro-Compán and Denis Poddubnyy (pictured) from the IMAS Scientific Committee presented the poster on ‘Factors Associated with Pain Intensity in axSpA’.

The data analysis seeks to identify which factors, such as sociodemographic factors, lifestyle or comorbidities are most often reported alongside higher pain intensity. The poster identifies several factors, including difficulties in finding a job; poorer mental health; greater spinal stiffness and increased functional limitation; as well as a lower level of education (lack of university degree). The poster concludes that pain is a critical element and that to improve overall quality of life, pain reduction should be a priority of treatment.

Thank you to Drs Navarro-Compán and Poddubnyy for their continued support of IMAS.

Reporting on EULAR 2024

Attending EULAR is one of the highlights of ASIF’s year. It is an opportunity to share our work with the international rheumatology and healthcare community, connect with our members and meet with our supporters.

The axSpA patient community played an important role at EULAR, representing the international patient voice in one of the biggest rheumatology meetings in the world. We are proud to share reports on some of the work that ASIF members, trustees and staff presented at EULAR and their experiences of the meeting.

Read EULAR Report

SpA Congress, Belgium

The annual International Congress on Spondyloarthritides took place in Ghent between 5 and 7 September. This unique event brings together the world’s leading clinicians and researchers, focussing solely on the disease area of spondyloarthritis. The congress is an important yearly event, ensuring that those working to develop better understanding of, and treatments for, spondylarthritis get the opportunity to share their work and hear from other experts in the field.

ASIF was represented at the event by Marco Garrido-Cumbrera, who alongside Denis Poddubnyy and Victoria Narvarro-Compán (IMAS scientific committee), presented six posters from the International Map of Axial Spondyloarthritis (IMAS). IMAS was well represented at the congress with six out of a total of 28 posters in the first poster session.

Two posters were presented on regional differences observed in IMAS; one on the differences in clinical phenotypes and another in patient journey and healthcare utilis.

ation. One poster looked at factors associated with poor mental health and another with factors associated with pain intensity. A fifth poster covered the methodology and main findings of IMAS; and the final poster looked at demographic, disease and geographic elements of the diagnostic delay.

Whilst many sessions at the SpA congress were highly scientific in nature, there were several sessions that are of interest to patients and patient organisations. Felicie Constantino (France) gave a presentation on ‘severe axSpA’ and how the severity of the disease is, or could be, assessed. We were pleased to see that, during the presentation, she used a slide from the European Map of Axial Spondyloarthritis (EMAS) to demonstrate the impact of the disease on working life.

Felicie Constantino presentation, what is severe axSpA?

The congress ‘clinical grand debate’ was about how people respond to treatment and whether the main treatment target should be pain or inflammation. The motion proposed was ‘control of pain is the key outcome in SpA’, which was argued by Kurt de Vlam (Belgium). Opposing the motion was Atul Deodhar (USA), who argued that inflammation is the key outcome measure. He argued that, by focussing on pain, other key outcomes, including inflammation are likely to be overlooked; and that using pain reduction as the key target would be a step backwards in the management of Spondyloarthitis.

EULAR 2024

Reflecting on EULAR 2024

For ASIF, the most important part of EULAR is meeting so many people who are passionate about improving the lives of people living with axSpA! Thank you to everyone who visited our booth and found out more about our work.

Having the opportunity to talk to rheumatologists and other healthcare professionals face to face is invaluable. We spent much of our time discussing the IMAS Global Report and the real-life impact of axSpA. The results from the report echoed what many clinicians told us they hear every day: in particular that the delay in diagnosis can have a debilitating impact, and that many of their patients experience poor mental health due to their condition.

Hundreds of rheumatologists took away a copy of the IMAS Global Report. We hope the content and calls to action will help them work in partnership with their patients to improve health outcomes. Furthermore, we hope the reports are shared with colleagues and the information is disseminated through their networks.

Three IMAS posters were presented at EULAR, as well as a publication-only abstract. The posters gave an opportunity to learn more about the factors are associated pain intensity and poorer mental health. The third poster looked at the regional differences for patients on their journey to diagnosis and their use of healthcare systems.

Representatives from many of our member organisations attended EULAR. Meeting these dedicated individuals in person is invaluable. EULAR presents an opportunity to bring our members together for informal conversations and networking, which frequently leads to new ideas and opportunities.

EULAR also provides a rare opportunity to meet with representatives from industry face-to-face, exchanging updates and exploring opportunities for future support and collaboration.

As always, the scientific programme, posters and workshops were outstanding. Hearing about the new developments in axSpA research is exciting, and listening to presentations about improving the care and outcomes of people living with the conditions is hugely positive.

We were also excited to have an ASIF poster presented by Jo Lowe, ASIF’s Project Manager, about our Delay to Diagnosis awareness campaign. The project produced three films and full social media toolkits in nine languages to our members to help them spread the word about the signs and symptoms of axSpA.

Over the coming weeks we will share further reviews of key EULAR sessions that will interest our members.

The evening before EULAR opened, we hosted the Spotlight on IMAS event. The event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. The Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South Africa to Canada, India to Ukraine. Read more about the event.

If you would like more information about our work, supporting a patient organisation in your country, using the IMAS data in your country, or anything else please contact us.

Read IMAS Global Report

Explore the IMAS data in Numbers

Read about Spotlight on IMAS event

Information for people living with axSpA

Information for Patient Organisations

Spotlight on IMAS

Spotlight on IMAS, Vienna, June 2024

DSC 0013Spotlight on IMAS, Vienna, June 2024

Spotlight on IMAS, Vienna, June 2024

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Shining a spotlight on the real-life impact of axSpA

The Spotlight on IMAS event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. On the eve of EULAR 2024, the Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South Africa to Canada, India to Ukraine.

Andri Phoka, ASIF Trustee, welcomed everyone, provided an overview of IMAS and thanked Novartis for transferring ownership of IMAS to ASIF.

Professor Marco Garrido Cumbrera explored the IMAS findings and their real-life impact. Punctuating Marco’s presentation were videos from people around the world who shared the impact that axSpA has had on their lives. Annie from Australia shared how her delay to diagnosis led her not to have children; in Colombia axSpA prevented a young woman from working, leading her to be financially dependent on her father. Tsleng from South Africa described how she lost friends as they didn’t understand what she was experiencing. Andri from Cyprus shared how axSpA is just one of the physical conditions that she faces, alongside Chron’s disease and hypertension and how managing all her physical symptoms is incredibly challenging.

The recently published IMAS report, “The Burden of Axial Spondyloarthritis: a global patient perspective” underlines that axSpA is not simply a physical disease that needs to be treated. It impacts every area of a person’s life and life choices. Therefore, the average seven-year delay to diagnosis must be reduced and healthcare professionals need to consider the impact on an individual, focusing on quality of life and providing multidisciplinary care.

Dr Victoria Navarro Compán, President Elect of ASAS, spoke about her pleasure at seeing the IMAS project develop from the national survey in Spain in 2017 into a European and then a global initiative; the importance of the IMAS findings; and the potential of them to educate healthcare professionals and influence clinical practice.

Mike Mandelbaum, Executive Director of ASIF closed the main presentations by sharing ASIF’s plans for IMAS in the future. He shared that IMAS will be a cornerstone of a new advocacy strategy which ASIF will develop over the coming months.

He commented “Most change happens at local and national levels, so we plan for more of our work to respond to national and regional social and healthcare systems dynamics and priorities. We therefore plan a regional Latin American IMAS report, which will compare individual country data to aggregated regional data in ways which shine a spotlight on where individual countries are performing well or poorly against their closest peers. We believe this can become a powerful advocacy tool.”

Questions and a panel discussion followed the presentations, focusing on how the IMAS Report can be used at a national level.

Over dinner, attendees continued conversations about the impact of axSpA in their countries and how the IMAS Report can be used to leverage change.

Thank you to our presenters and to everyone who attended the event. If you have questions about the event, about IMAS or how you can use the IMAS Report in your country, please contact Jo Lowe.

Read IMAS Global Report

Spotlight on IMAS

Our celebratory ‘Spotlight on IMAS’ reception in Vienna is only days away. The event, the evening before the EULAR congress starts, will bring together our members, industry, healthcare professionals and key stakeholders. ASIF’s new ownership of IMAS is an important milestone and will help to inform ASIF’s future work. IMAS continues to help us understand how we can best support our members and provides us with exciting new opportunities.

The event will take place at the Wiener Rathauskeller from 18:30 to 21:30 on Tuesday 11 June. We will explore the key findings from IMAS and hear the real-life experiences of people who live with axSpA. Dr Victoria Navarro Compán, President Elect of ASAS, will give the Keynote address, alongside presentations by Dr Marco Garrido Cumbrera from the University of Seville, ASIF Trustee Andri Phoka, and our Executive Director, Mike Mandelbaum.

We hope to see you there.

RSVP here

IMAS in 2024

Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA. The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with symptoms get an accurate diagnosis with minimal delay and the ongoing support and care they need.

Webinar, 13 March

To showcase the report and discuss what the evidence and calls to action mean for patients and patient organisations, we are holding a webinar on 13 March (12:00 to 13:30 GMT). As well as highlighting some of the key results from the report, we will hear clinician and patient organisation perspectives on how IMAS can be used as a tool for change. Please email Jo Lowe to confirm your attendance.

Spotlight on IMAS event, 11 June

A celebratory event will take place in Vienna, the evening before the EULAR congress commences. The event, on Tuesday 11 June (18:30-21:30 CET), will bring together our members, industry partners, rheumatologists, HCPs, and other key stakeholders. It will be an opportunity to celebrate the success of IMAS so far, its transition to ASIF and the patient community; and to share our plans for the future. Please contact Jo Lowe to secure your place.

Read the IMAS Global Report

Global IMAS Report to be launched in January

Next month ASIF will launch its International Map of Axial Spondyloarthritis (IMAS) report, The burden of axial spondyloarthritis: a global patient perspective. The report demonstrates the challenges of living with axSpA – from getting a timely diagnosis to the health and socioeconomic impacts. A core aim of IMAS is to incorporate the patient perspective and experience into healthcare policy and into decisions about axSpA care. To support this, the report contains calls to action, aimed at healthcare professionals and policymakers. These include ensuring the needs of axSpA patients are fully understood, that a multidisciplinary approach is taken to care and that healthcare professionals are better equipped to recognise the signs and symptoms of axSpA.

The report will be an invaluable advocacy tool for our members and is an essential read for anyone interested in the impact of axSpA. Using IMAS results, we underline the real-life burden of axSpA on both an individual’s life, and on healthcare utilisation.

In the lead up to the publication of the Report, ASIF continues to spread the word about the reality of living with the disease. Our abstract and presentation at this year’s EULAR congress demonstrated how axSpA can affect almost every area of a person’s life and highlighted numerous unmet needs of those living with the disease.

In November, we presented a poster on the IMAS findings and forthcoming global report at the Galapagos Patient Partnership Day and the EULAR PARE Best Practice Fair. Both events gave ASIF the opportunity to share the IMAS project with other patient organisations and to demonstrate how we can use the evidence gathered through IMAS to advocate for change.

We will continue to disseminate the important results from IMAS; we are busy working with the IMAS scientific committee to prepare five new IMAS abstracts for submission to EULAR 2024.

To coincide with the report publication, new webpages highlighting IMAS’ key findings will be published on the ASIF website, providing a fascinating deep dive into the data. Additional materials, including an advocacy toolkit and infographic showing the key IMAS findings, have also been created to support our members’ work. These resources will be available in January.