The initial baseline questionnaire is the lengthiest, requiring approximately 25-30 minutes to complete. However, subsequent follow-up surveys are shorter, typically taking about 15-20 minutes. It’s crucial to respond to all the questions in each survey.

There will be no direct benefit to you from participating in the study. Information from the study may help other patients in the future

Participating in this study will not put you at a disadvantage, except for the time it takes to fill out the questionnaires. There are no additional tests or treatments involved. Your rheumatology care will continue as usual without any changes.

If you decide to take part, you will be asked to sign a consent form giving us permission to use your data, in an anonymised form, for this research. You will then have your first study visit, which might be the same day or arranged for a later date that is convenient for you. It is expected this first visit will not take more than 1 hour.

At the first visit the research team of specialist doctors and nurses in rheumatology will ask you for some basic health and lifestyle information, such as diet and smoking. They will also take some simple measurements such as your blood pressure, weight and height, and will do a full examination of all of your joints looking for pain and/or swelling.

After this, you will be given your personal, secure link to the online BAxSIC research portal where you can answer some questions about your arthritis. The questions should not take more than 15 minutes to complete, and you can save and come back later to complete if you need to.

You can access the portal from any device with internet access, but we would recommend a laptop of iPad as it is easier to see the questions. The team will always be on hand to help if you have any difficulty. We will provide you with our contact details at your first appointment.

After this, the research team do not need to see you for 2 years, when you will have another visit with your rheumatologist. In the interim, you will receive electronic or phone texts reminders to log into the research portal and update some of your symptom/ treatment information online once every 6 months, for the next three years. After that, the rest is down to you.

The BAxSIC study is open to anyone who has received a diagnosis of axial spondyloarthritis in the last six months.

The BAxSIC study was set up with the help of patients, and for the benefit of patients.

To date there is not much research to help us understand, from the affected person’s viewpoint, what it is like to live with axial Spondyloarthritis, right through from when you first start getting symptoms to eventually getting a diagnosis and treatment.

To us, it is unacceptable that a 5-8 year delay in the diagnosis of axSpA exists in 2023 worldwide. Bringing together patients and clinicians, the BAxSIC study was designed to help doctors, nurses and other healthcare staff to better understand what your experience is like and how the impact of this delay translates in the lives of those affected. This will help create better treatment and referral pathways in the future in order to improve the diagnosis and treatment of axial Spondyloarthritis.