Duration: Data collection (2010 - 2018) (analysis ongoing until 2022)
Funders: Pfizer / AbbVie
Chief investigator: Professor Gary Macfarlane
Deputy chief investigator: Professor Gareth Jones
The Scotland Registry for Ankylosing Spondylitis (SIRAS) attempted to recruit all patients with ankylosing spondylitis managed in NHS rheumatology departments in Scotland. Between October 2010 and October 2013, over 2,000 patients with a clinical diagnosis of ankylosing spondylitis (AS) were recruited to the registry from rheumatology departments across Scotland. Clinical data was obtained through audits of patients’ medical records, and patient‐reported information was collected from around half of study participants by postal questionnaire, covering information on general health, pain, function, quality of life and fatigue. Since then, participants who consented to follow‐up have received questionnaires one years and two years after baseline. A further follow‐up in 2016 collected longer‐term follow‐up data on a number of disease outcomes, such as quality of life and occupational characteristics, as well as new data on disease flares, periodontal disease and the presence of comorbid fibromyalgia. Analysis from registry data remained ongoing, with the latest publication to come from this work in 2022.
- What results has the study produced?
-
The following publications draw on analysis of the SIRAS registry data:
- Jones et al. The trajectories of pain, and medication use in axial spondyloarthritis: data from the Scotland Registry for Ankylosing Spondylitis (SIRAS). Final report (PDF) is available at: https://osf.io/fr8mz
- Morton et al. Driving difficulties in patients with axial spondyloarthritis: results from the Scotland Registry for Ankylosing Spondylitis. Arthritis Care and Research; 2022; 74 (9): 1541-9. https://doi.org/10.1002/acr.24595
A Plain Language Summary for this paper is also available here.
- Dean et al. Five potentially modifiable factors predict poor quality of life in ankylosing spondylitis: results from the Scotland Registry for Ankylosing Spondylitis. Journal of Rheumatology 2018; 45(1): 62-9. https://doi.org/10.3899/jrheum.160411
- Jones et al. Disease severity in never smokers, ex-smokers, and current smokers with axial spondyloarthritis: results from the Scotland Registry for Ankylosing Spondylitis. Arthritis Care and Research 2017; 69(9): 1407-13. https://doi.org/10.1002/acr.23157
- Dean et al. Differences in the prevalence of ankylosing spondylitis in primary and secondary care: only one-third of patients are managed in rheumatology. Rheumatology 2016; 55(10): 1820-5. https://doi.org/10.1093/rheumatology/kew228
You can read the original SIRAS study protocol here:
- Jones et al. Epidemiology Research Report 2016a: Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol. University of Aberdeen, Aberdeen. https://doi.org/10.20392/c12g-tj65.
- Jones et al. The trajectories of pain, and medication use in axial spondyloarthritis: data from the Scotland Registry for Ankylosing Spondylitis (SIRAS). Final report (PDF) is available at: https://osf.io/fr8mz
- Contact
-
For further information about the study, you can send general enquiries to epidemiology@abdn.ac.uk.