What is the RAISE project about?

This survey is for people in the UK who have been diagnosed with one of the rare autoimmune rheumatic diseases (known as RAIRDs). RAIRDs describes conditions including systemic vasculitis (e.g. ANCA associated vasculitis, Behçet's syndrome or Polyarteritis Nodosa) systemic lupus erythematosus, inflammatory myositis (such as dermatomyositis or polymyositis), Scleroderma or Sjögren's disease.

We are interested in developing a support package for people with these diseases and would like your help with what to include. This survey is in English, please contact your NHS team or email the study team for translated versions (Arabic, Hindi, Italian, Polish, Portuguese, Romanian, Spanish and Urdu). Please complete and submit the survey before 31/03/2026. After this date the survey will be closed. 

How will my data be used?

Taking part in this study is voluntary. No data will be recorded if you decline to take part now or part way through the survey. Should you decide to take part, you are invited to complete this online survey, which asks about your experience of having a rare autoimmune rheumatic condition. 

The University of the West of England (UWE), Bristol is the sponsor for this study based in the United Kingdom. Our research has been approved by the UWE Research Ethics Committee (IRAS number: 336948; Research Ethics Committee (REC) number: 24/NW/0282). UWE, Bristol will be using information from you in order to undertake this study and will act as the data controllers for this study. This means that we are responsible for looking after your anonymous information and using it properly. UWE, Bristol will keep your anonymous questionnaire data for 15 years after the study has finished. Please contact the study team for a copy of the UWE privacy notice for more information.

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information that we have already obtained. To safeguard your rights, we will use the minimum personally identifiable information possible. You will be given a randomly generated ID number when you complete the survey. Please retain this number so that we can identify you if you decide you would like us to remove your data from the study up to a month after you have participated.

If you are taking part in the survey through your hospital (i.e. after a clinic appointment), you may also be given a screening identification number to enter by the hospital team for their records.

How long will it take to complete the survey?

The survey should take you around 20-30 minutes to complete.

Contact us:

If you have any questions, please email the study team.

To continue with this survey, please click the arrow on the bottom right side of your screen.