Time to Diagnosis Survey – information for patients

What am I being asked to do?

We’re inviting you to take part in a quick survey to understand your journey to diagnosis of axial spondyloarthritis (axial SpA). In this survey, you will be asked a few questions about the time it took you to receive a diagnosis and a few basic questions about yourself (such as date of birth, gender and ethnicity). If you are unsure about how to answer a question, please consider asking a member of the rheumatology team.

Why am I being asked to do this?

You have recently received a diagnosis of axial SpA (including ankylosing spondylitis and non-radiographic axial spondyloarthritis). Since the launch of the National Axial Spondyloarthritis Society (NASS) ‘Act on Axial SpA’ campaign in 2021, preliminary data suggest the average time to diagnosis has fallen from 8.5 years to around 7.6 years. This is still too long. To reduce this further, it is important to understand the current time to diagnosis, both locally and nationally, and at what stages of the patient journey the delays occur.

How will we use your data?

Your data will be completely anonymised and will only be used as part of a dataset including other people. Nobody will be able to directly identify you from this dataset. Your individual data will not be shared outside of NASS.

Summarised group data may be shared with your rheumatology team for audit purposes. Summarised survey results will be used in NASS policy and campaigning work, policy reports and scientific publications.

To read the NASS privacy policy, please visit: https://nass.co.uk/privacy-information-notice/