This page contains a list of studies and publications utilising the UKPSSR data and/or samples below.
Journals
1. Autonomic symptoms are common and are associated with overall symptom burden and disease activity in primary Sjogren's syndrome.
Newton JL, Frith J, Powell D, Hackett K, Wilton K, Bowman S, Price E, Pease C, Andrews J, Emery P, Hunter J, Gupta M, Vadivelu S, Giles I, Isenberg D, Lanyon P, Jones A, Regan M, Cooper A, Moots R, Sutcliffe N, Bombardieri M, Pitzalis C, McLaren J, Young-Min S, Dasgupta B, Griffiths B, Lendrem D, Mitchell S, Ng WF; on behalf of the UK primary Sjögren's syndrome registry.
Ann Rheum Dis. 2012 May 5. (This is a free article)
2. "Impaired functional status in primary Sjögrens syndrome", by Hackett, Katie; Newton, Julia; Frith, James; Elliott, Chris; Lendrem, Dennis; Foggo, Heather; Edgar, Suzanne; Mitchell, Sheryl; Ng, Wan-fai. Arthritis Care Res. (in press)
3. Occupational therapy: a potentially valuable intervention for people with primary Sjögren’s syndrome. Hackett K, Newton J, Ng W-F
(2012) British Journal of Occupational Therapy. (in press)
4. Potential diagnostic utility of anti-centromere antibody in primary Sjögren’s syndrome in the UK. Collins K, Mitchell S, Griffiths B, Bowman SJ, Ng WF on behalf of the United Kingdom primary Sjögren’s syndrome registry. Clin. Rheumatol. (accepted)
Abstracts
2012:
1. HOW GOOD ARE THE EULAR SJÖGREN’S SYNDROME DISEASE ACTIVITY INDEX (ESSDAI), AND EULAR SJÖGREN’S SYNDROME PATIENTS REPORTED INDEX (ESSPRI) IN PREDICTING HEALTH STATUS IN PRIMARY SJÖGREN’S SYNDROME?. Lendrem D et al. British Society for Rheumatology. 2012, Glasgow & European League Against Rheumatism. 2012, Berlin
2. EVALUATING HEALTH STATUS OF 620 PATIENTS WITH PRIMARY SJÖGREN’S SYNDROME USING EQ-5D. Lendrem D. et al. British Society for Rheumatology. 2012, Glasgow & European League Against Rheumatism. 2012, Berlin
3. THE CLINICAL RELEVANCE OF ANTI-RO52 AND ANTI-RO60 IN PATIENTS IN THE UNITED KINGDOM PRIMARY SJOGREN’S SYNDROME REGISTRY (UKPSSR). Vila J et al. British Society for Rheumatology. 2012, Glasgow & European League Against Rheumatism. 2012, Berlin
4. SERUM CYTOKINE AND CHEMOKINE PROFILING IN PRIMARY SJÖGREN’S SYNDROME. Tarn JR et al. European League Against Rheumatism. 2012, Berlin
Funding success
1. Anti-M3R antibodies, autonomic dysfunction and primary Sjögren’s syndrome. Arthritis Research UK. Smith P. et al. University of Liverpool
2. Tractiss’ study – a trial of anti-B cell therapy for primary Sjögren’s syndrome. Arthritis Research UK. Bowman SJ, Emery P & Pitzalis C. et al. University of Birmingham, University of Leeds & Barts & the London NHS Trust
3. Assessing the cardiovascular risk in primary Sjögren’s syndrome. British Sjogren's syndrome association. Kitas GD. & Ng WF et al. Dudley Hospitals and Newcastle University
4. Epigenetic regulation of gene expression in primary Sjögren’s syndrome. Sir Jules Thorn Charitable Trust. Ng WF et al. Newcastle University
5. Feasibility study of a novel approach to determine the population prevalence of primary Sjögren’s syndrome. NIHR. Ng WF et al. Newcastle University
6. Identifying the biological signature of fatigue: Medical Research Council UK. Ng WF et al. Newcastle University
Other projects:
The UK Evaluation of Daily Activity Questionnaire (UKEDAQ) in Musculoskeletal Conditions: psychometric testing and functional evaluation. Hammond A et al. University of Salford
Ng WF, Bowan SJ, Griffiths B on behalf of the UKPSSR study group. United Kingdom primary Sjögren's syndrome registry - A united effort to tackle an orphan rheumatic disease. Rheumatology (Oxford). 2010 (accepted). doi:10.1093/rheumatology/keq240
Sjögren's Genetic network (SGENE). National Institute of Health, USA. (PI: K Moser, Oklahoma, US). We contribute all our DNA samples for this international genome-wide association study, and we are currently one of the biggest contributors to the project. This study has identified a number of signals and is now in the validation phase. The latest results will be presented at the American College of Rheumatology Annual Conference in Chicago in Nov 2011.
Anti-muscarinic receptor antibodies, primary Sjögren's syndrome and autonomic dysfunction (CLRN ID: 7456). Arthritis Research UK. (PI, P Smith, Liverpool). This study has been adopted into the NIHR portfolio. This study aims to determine the diagnostic values of anti-M3R antibodies in PSS and their relationship with autonomic dysfunction in PSS. The experimental work has just been completed, data are currently being analysed.
United Kingdom Primary Sjögren's Syndrome Cohort - Does fatigue in patients with primary Sjögren's syndrome correlated with general disease activity and damage? (CLRN ID:8594) (PI: W-F Ng, Newcastle). This study investigates the relationship between biological disease activity and levels and characteristics of fatigue in primary Sjögren's syndrome. Study ongoing.
Assessing the cardiovascular risk of patients with primary Sjögren's syndrome (CLRN ID:7782). British Sjögren Syndrome Association. (PIs: W-F Ng, Newcastle; G Kitas, Dudley; E Price, Swindon; S Bowman, Birmingham). In this study, additional data on cardiovascular risk factor and events will be collected. Pulse-wave velocity and a panel of vascular biomarkers (as surrogate markers of increased cardiovascular risk) will be measured in a subset of patients. Phase I of the study has now been completed and data has been submitted for publication.
Validation of European primary Sjögren's syndrome disease activity index and patient reported index study. EULAR. (PIs: X Mariette, R. Seror (Paris, France)). In this study, two proposed outcome measure tools will be validated. The recruitment for this study has been completed and the data are being analysed in Paris.
The prevalence and predictor of autonomic dysfunction in primary Sjögren's syndrome. Newcastle University. (PI: W-F Ng & J Newton, Newcastle). Sample size: 300. Submitted for publication.
Epigenetic regulation of gene expression in primary Sjögren's syndrome. Sir Jules Thorn Charitable Trust PhD Scholarship. (PI: W-F Ng, Newcastle). Sample size: 50-80. This study aims to investigate the role of epigenetic regulation of candidate genes that are important in PSS pathogenesis.
Randomised placebo-controlled clinical trial of rituximab in primary Sjögren's syndrome. Arthritis Research UK. (PIs: S Bowman, Birmingham; P Emery, Leeds; C Pitzalis, London). Sample size: 110. Patients with residual oral or salivary gland function will be treated with 2 courses of rituximab or placebo at baseline and at 24 weeks. Primary outcome measures are greater than 20% improvement in oral/ocular function and fatigue. Recruitment started summer 2011.
Candidate gene association study. Swedish Rheumatism Association. (PI: G Nordmark, Uppsala, Sweden). Sample size: >500, as many as possible. This study seek to validate a set of candidate genes that has been linked to the development of PSS and PSS-associated lymphoma in a Scandinavian cohort. Study ongoing.
