British Axial Spondyloarthritis Inception Cohort
This UK study, called BAxSIC, is looking at axial spondyloarthritis (axSpA), a health condition that causes back pain and stiffness. We want to understand more about how long it takes for people to get diagnosed with axSpA, and how this delay might affect their work and daily activities. The study will also follow people newly diagnosed with axSpA to see how their condition progresses, including their pain, tiredness, and how well they can do daily tasks. We are also interested in the treatments they receive. This study will run for three years, starting in January 2023, and aims to gather real-world information to help improve care for people with axSpA.
At a glance
What is this study about?
The British Axial Spondyloarthritis Cohort (BAxSIC) study is a research project designed to help us understand more about a condition called axial spondyloarthritis, or axSpA. This condition causes ongoing pain and stiffness, mainly in the spine. In the past, it often took a long time for people to get a diagnosis, sometimes as long as ten years. This delay could mean that important treatment was also delayed, which might have led to greater problems over time. Now, with better ways to detect the condition earlier, doctors can diagnose axSpA sooner, even before major changes show up on X-rays.
This study is important because it will follow people who have been recently diagnosed with axSpA in the UK. By collecting information over time, we want to see how the condition affects their daily lives, their ability to work, and their overall well-being. We'll also look at how quickly they were diagnosed after their symptoms started and if this made a difference to their life. Studying a group of people like this, over several years, helps researchers gather valuable information about how the condition naturally develops and how different treatments might be helping.
Ultimately, the goal of this research is to improve care for everyone with axSpA in the UK. By understanding the real-world experiences of patients – from diagnosis delays to daily challenges and response to treatment – doctors and healthcare providers can make better decisions about how to support people with this condition. This study is a joint effort by medical experts and patient groups to make a real difference in the lives of those affected by axSpA.
Key takeaways
- The study helps understand axial spondyloarthritis in the UK.
- It focuses on newly diagnosed patients and how their condition changes.
- No new treatments or tests are involved, only data collection from regular care.
- Participation helps improve care for others with axSpA.
- The study runs for an initial three years.
- You can withdraw from the study at any time without affecting your medical care.
Who may be eligible?
To take part in this study, you need to be at least 16 years old. You must have received a diagnosis of axial spondyloarthritis (which includes ankylosing spondylitis) within the last six months before joining the study.
It's important that you are able and willing to understand what the study involves and agree to take part. This is called 'informed consent'. If you are under 16, or if you can't communicate in English or understand enough to give your consent, then unfortunately, you won't be able to join this particular study.
- Are you 16 years old or older?
- Have you been diagnosed with axial spondyloarthritis (or ankylosing spondylitis) within the last 6 months?
- Are you able to speak and understand English?
- Do you feel comfortable understanding what the study involves and giving your permission to take part?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
This study does not involve any new treatments or medicines. It is an 'observational' study, which means researchers will simply collect information about your health and how your condition progresses over time. You will continue to receive your usual medical care from your own doctors. We will be collecting information from your routine clinic visits. The study will follow people for an initial period of three years, starting from when you join. We will be looking at things like your level of pain, how tired you feel, your ability to perform daily tasks, and your work situation. There are no extra tests or appointments specifically for this study beyond your regular medical check-ups.
Potential risks and benefits
Locations (1)
- Chapel Allerton HospitalLeeds, United Kingdom· Recruiting
Common questions
What is axial spondyloarthritis (axSpA)?
It's a type of arthritis that mainly causes long-term pain and stiffness in the spine, and sometimes in other joints.
What does a 'cohort study' mean?
It means the study follows a group of people over time to see how their health changes and what factors might be important.
Will I have to take new medicine or get extra tests?
No, this study only gathers information from your regular care; it doesn't involve new medicines or extra tests.
How long will I be in the study?
The study aims to follow people for an initial period of three years.
Who is funding this research?
This study received grants from Pfizer Limited, UCB, and Novartis to support the research.
How to find out more
Helena Marzo-Ortega, MD/PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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