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We hope you find the information on these pages helpful. Our team is working tirelessly to provide up to date advice in relation to the COVID-19/Coronavirus pandemic. Record numbers of people are now turning to NASS for support, and we hope to be here for everyone. Our helpline and advice service are only possible thanks to donations from people like you.

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Gold Standard Time to Diagnosis Programme

The Gold Standard Time to Diagnosis programme is the world’s first to set a Gold Standard for the diagnosis of axial SpA (AS). It aims to reduce the average time for diagnosis from eight-and-a-half years to just one.

While I waited, my pain got worse and unbeknown to me my spine started to fuse, and irreversible damage was caused.

Paul Curry

Why do we need a faster diagnosis?

A faster diagnosis will enable people to get the right care earlier and start living well with axial SpA (AS) sooner.

Axial SpA (AS) is a condition that affects young people. Symptoms typically start in late teens to early twenties, with the average age of onset being 24 and diagnosis at around the age of 32. There are currently 220,000 people in the UK living with this painful and progressive form of inflammatory arthritis.

While people wait for a diagnosis, many withdraw from socialising, and find it harder to establish careers, form relationships, and start families.

Watch this video to find out more.

We need your help

It is time to end the eight-and-a-half-year delay for thousands of people who are waiting to be diagnosed with axial SpA (AS). We cannot do this alone and need your help.

We are currently running a consultation on the first draft of the Gold Standard and need you to take part.

Whether you are a healthcare professional or someone living with axial SpA (AS), you can find out more about the Gold Standard Time to Diagnosis programme here and take part in the consultation here.

The consultation is open until 22 August 2020. There are two ways to respond. You can either complete the questionnaire here and email it to goldstandard@nass.co.uk or fill in our online questionnaire.

If you have any questions about the programme or the consultation please email goldstandard@nass.co.uk

 

About the Gold Standard Time to Diagnosis programme

The Gold Standard Time to Diagnosis programme is led by the National Axial Spondyloarthritis Society (NASS) in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust and is funded by UCB.

UCB (www.ucbpharma.co.uk) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases.

The Gold Standard Time to Diagnosis programme is funded by UCB as sponsor of the project. UCB is a non-voting member of the project board and has no editorial control over the content or output of the programme.