Welcome to ASIF’s Delay to Diagnosis Report webpage. Here you can find out more information about our forthcoming report, why it has been developed and what it will contain.

ASIF has developed this definitive report on the global impact of axSpA diagnostic delay. Our hope is that it will support those working to reduce the delay and be a valuable resource in highlighting the need for change to policymakers and healthcare systems. We want to help create a future where no one living with the condition has to wait 7 years for a diagnosis.

The report will be available to download on the ASIF website from 28 June.

About the report

The forthcoming report marks a significant point in ASIF’s mission to raise awareness of the key challenges in axSpA diagnosis. The report sets out for the first time a global perspective of the impact of diagnostic delay and the various factors that contribute to it. It also highlights opportunities for overcoming the delay, drawing on different examples of best practice from around the world.

The report has been informed by the findings of latest available axSpA literature, as well as patient and expert insights from two international Global Forum events held by ASIF in Autumn 2020.

These Global Forum events provided a unique platform for axSpA experts from across the world to come together and discuss their experiences of diagnostic delay and opportunities for reducing it. Almost 50 experts attended each of the two events, representing 23 countries and 5 continents. The outputs from these discussions have been invaluable in shaping the report and shining a spotlight on the consequences of diagnostic delay in axSpA.

Why is a report needed?

Put simply, ASIF believe that the current global delay in axSpA diagnosis is unacceptable. Data shows that following the first onset of symptoms, people across the world wait on average around 7 years to receive a diagnosis. This figure has remained static, meaning that patients diagnosed in recent years experience very similar delays to those in the 1990s and 2000s.

Whilst there have been significant developments in other areas of axSpA – from its management to treatment – overcoming the diagnostic delay in many ways remains the biggest barrier to improving outcomes.

ASIF hope that the publication of this new, definitive report will generate much-needed awareness. The report aims to support those working to reduce the delay to take action.

What will the report contain?

  • Section 1 Outlining what axSpA is (for those without an existing in-depth awareness of the disease) and providing an overview of the current global situation in diagnostic delay
  • Section 2 Setting out the key barriers to achieving timely diagnosis, drawing on patient experience and expert contributors
  • Section 3 Highlighting examples of best practice in reducing the delay and how these can provide opportunities for others

In these sections, the report will include a wealth of statistics and information about axSpA diagnosis and the impacts that delays can have on individuals. It will also set out key recommendations that we hope will help to instigate change in this area at a national-level.

The report will not solve this challenge in itself, but we hope it will be an important step on the journey.

For further information, please contact projectmanager@asif.info