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

Research output: Book/ReportOther Report

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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

Fingerprint

Ankylosing Spondylitis
Scotland
Registries
Periodontal Diseases
Epidemiology
Quality of Life
Randomized Controlled Trials
Spondylitis
Sacroiliac Joint
Fibromyalgia
Occupational Diseases
Uveitis
Rheumatology
Smoking Cessation
Inflammatory Bowel Diseases
Psoriasis
Arthritis
Medical Records
Epidemiologic Studies
Spine

Keywords

  • Ankylosing spondylitis 
  • Axial spondyloarthritis
  • Registry
  • Cohort

Cite this

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

Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol. / Jones, Gareth T; Dean, Linda E; Jones, Elizabeth A; MacDonald, Alan G; Marshall, David; McEntegart, Anne; Gibson, Jane; Hunter, John; Munro, Robin; Sturrock, Roger D; Macfarlane, Gary J.

Aberdeen : University of Aberdeen, 2016. 18 p.

Research output: Book/ReportOther Report

Jones, GT, Dean, LE, Jones, EA, MacDonald, AG, Marshall, D, McEntegart, A, Gibson, J, Hunter, J, Munro, R, Sturrock, RD & Macfarlane, GJ 2016, Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol. vol. 2016a, University of Aberdeen, Aberdeen. https://doi.org/10.20392/c12g-tj65
Jones GT, Dean LE, Jones EA, MacDonald AG, Marshall D, McEntegart A et al. Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol. Aberdeen: University of Aberdeen, 2016. 18 p. https://doi.org/10.20392/c12g-tj65
Jones, Gareth T ; Dean, Linda E ; Jones, Elizabeth A ; MacDonald, Alan G ; Marshall, David ; McEntegart, Anne ; Gibson, Jane ; Hunter, John ; Munro, Robin ; Sturrock, Roger D ; Macfarlane, Gary J. / Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol. Aberdeen : University of Aberdeen, 2016. 18 p.
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note = "Funding SIRAS was funded by unrestricted grants from Pfizer and AbbVie. The project was reviewed by both companies, during the award process, for Scientific merit, to ensure that the design did not compromise patient safety, and to assess the global regulatory implications and any impact on regulatory strategy.",
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