Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol

Gareth T Jones, Linda E Dean, Elizabeth A Jones, Alan G MacDonald, David Marshall, Anne McEntegart, Jane Gibson, John Hunter, Robin Munro, Roger D Sturrock, Gary J Macfarlane

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Abstract

Background
Ankylosing spondylitis (AS) is a chronic inflammatory arthritis predominantly affecting the spine and sacroiliac joints, although peripheral joints can be affected. It is commonly associated with a number of extra‐articular manifestations, including psoriasis, uveitis and inflammatory bowel disease. The study of AS has increased, particularly since the advent of Tumour Necrosis Factor inhibition. Much of what is known about the epidemiology of AS comes from small clinical studies, or large randomised controlled trials, with highly selected populations. However, there remain a number of unresolved issues in terms of epidemiology. For example: the understanding of long‐term quality of life, occupational outcomes, disease flares, and the link between other inflammatory conditions such as periodontal disease, is incomplete.
Methods / Design Between October 2010 and October 2013, over 2,000 patients with a clinical diagnosis of AS were recruited to the Scotland Registry for Ankylosing Spondylitis (SIRAS) from rheumatology departments across Scotland. Clinical data was obtained through audits of patients’ medical records, and patient‐reported information was collected by postal questionnaire. Since then, participants who consented to follow‐up have received questionnaires one years and two years after baseline. A further follow‐up is planned, in 2016, to collect longer‐term follow‐up data on a number of disease outcomes, such as quality of life and occupational characteristics, and to collect new data on disease flares, periodontal disease and the presence of comorbid fibromyalgia.
Discussion
While randomised controlled trials undoubtedly have their place, we believe that there is still a need for large, rigorous, epidemiological studies of AS. Various analyses are planned, including an examination of long‐term quality of life and occupational outcomes among persons with AS, the role of smoking cessation on disease outcomes, the epidemiology of disease flares, and the association between AS and periodontal disease. However, we hope that the greatest value will be achieved by creating a robust foundation upon which other studies can be built.
Original languageEnglish
Place of PublicationAberdeen
PublisherUniversity of Aberdeen
Number of pages18
Volume2016a
DOIs
Publication statusPublished - Mar 2016

Keywords

  • Ankylosing spondylitis 
  • Axial spondyloarthritis
  • Registry
  • Cohort

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    Jones, G. T., Dean, L. E., Jones, E. A., MacDonald, A. G., Marshall, D., McEntegart, A., Gibson, J., Hunter, J., Munro, R., Sturrock, R. D., & Macfarlane, G. J. (2016). Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol. University of Aberdeen. https://doi.org/10.20392/c12g-tj65