Rheumatology 2001; 40: 1180-1188
© 2001 British Society for Rheumatology
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Revisiting Sjögren's syndrome in the new millennium: perspectives on assessment and outcome measures. Report of a workshop held on 23 March 2000 at Oxford, UK
Rheumatology Department, Division of Immunity and Infection, The Medical School, University of Birmingham, UK,
1 National Institute of Dental and Craniofacial Research, National Institutes of Health, Bethesda, Maryland, USA,
2 Broegelmann Research Laboratory, University of Bergen, Norway,
3 Neuroscience Centre, National University Hospital, Righospitalet, Hornbaek, Denmark,
4 Piombino Hospital, Piombino, Italy,
5 Sjögren's Syndrome Research Centre, Department of Rheumatology, Malmö University Hospital, Malmö, Sweden and
6 Centre for Rheumatology, University College London, UK
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Introduction |
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The past decade has seen the development and validation of widely accepted outcome measures for use in randomized controlled trials and longitudinal observational studies in the autoimmune rheumatic diseases, particularly rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) [1]. This has generated criteria by which the effectiveness of specific therapy can be judged [2] and has allowed the results of different studies to be compared directly with each other. Furthermore, the underlying concepts, such as those of disease activity, damage and functional impairment, provide a framework to develop similar measures for related conditions.
Although proposals for the assessment of disease status [3] and damage [4] have been developed for primary Sjögren's syndrome, there are no internationally agreed and validated measures and so we have adopted the approach used previously in an EC Concerted Action Programme to develop disease activity assessment measures for
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Materials and methods |
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Part 1. Session objectives: to achieve a consensus on core outcome domains
Part 2. Session objectives: to determine a core set of questions and simple measures to evaluate surface exocrine glandular disease in the non-specialist out-patient setting
Part 3. Session objectives: to develop activity/damage/status measure(s)
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Results |
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Core domains
Assessment of sicca features (surface exocrine disease)
Assessment of multisystem involvement/disease activity
Damage
Open discussion
Respondent variation
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Discussion |
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Acknowledgments |
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Notes |
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References |
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