Publications

The aims of the United Kingdom Primary Sjogren's Syndrome Registry are to promote high quality research in Primary Sjogren's Syndrome (pSS) and improve the treatment of people with pSS. 

Increasing research, improving patient care


This page contains a list of studies and publications utilising the UKPSSR data and/or samples.


Publications



Lessard CJ, Li H, Adrianto I, Ice JA, Rasmussen A, Grundahl KM, Kelly JA, Dozmorov MG, Miceli-Richard C, Bowman S, Lester S, Eriksson P, Eloranta M-L, Brun JG, Gøransson LG, Harboe E, Guthridge JM, Kaufman KM, Kvarnström M, Jazebi H, Cunninghame Graham DS, Grandits ME, Nazmul-Hossain ANM, Patel K, Adler AJ, Maier-Moore JS, Farris AD, Brennan MT, Lessard JA, Chodosh J, Gopalakrishnan R, Hefner KS, Houston GD, Huang AJW, Hughes PJ, Lewis DM, Radfar L, Rohrer MD, Stone DU, Wren JD, Vyse TJ, Gaffney PM, James JA, Omdal R, Wahren-Herlenius M, Illei GG, Witte T, Jonsson R, Rischmueller M, Rönnblom L, Nordmark G, Ng WF for UK Primary Sjögren's Syndrome Registry, Mariette X, Anaya J-M, Rhodus NL, Segal BM, Scofield RH, Montgomery CG, Harley JB and Sivils KL. Identification of multiple genetic variants associated with Sjögren’s syndrome involved in both the innate and adaptive immune responses. Nature Genetics 2013 Nov;45(11):1284-92.
 

Juarez M, Toms T, de Pablo P, Mitchell S, Bowman SJ, Nightingale P, Price E, Griffiths B, Hunter J, Gupta M, Bombardieri M, Sutcliffe N, Pitzalis C, Pease C, Andrews J, Emery P, Regan M, Giles I, Isenberg D, Moots R, Collins K, Ng WF, Kitas GD on behalf of the UK primary Sjögren’s syndrome registry. Cardiovascular risk factors in females with Primary Sjögren’s syndrome: United Kingdom Primary Sjögren’s syndrome registry results. Arthritis Care Res. [accepted]
 

Nordmark G, Wang C, Vasaitis L, Eriksson P, Theander E, Kvarnström M, Forsblad-d’Elia H, Jazebi H, Sjöwall C, Reksten TR, Brun JG, Jonsson MV, Johnsen SJ, Wahren-Herlenius M, Omdal R, Jonsson R, Bowman S, Ng WF, Eloranta M-L, Syvänen A-C and UK Primary Sjögren’s Syndrome Registry, Association of genes in the NF-κB pathway with antibody positive primary Sjögren’s syndrome. Scand J Immunology 2013 Nov;78(5):447-54.
 

Collins KS, Balasubramaniam K, Viswanathan G, Natasari A, Tarn J, Lendrem D, Mitchell S, Zaman A, Ng WF. Assessment of blood clot formation and platelet receptor function ex vivo in patients with primary Sjogren's syndrome. BMJ Open. 2013 May 28;3(5). doi:pii: e002739. 10.1136/bmjopen-2013-002739.
 

Lendrem D, Mitchell S, McMeekin P, Bowman S, Price E, Pease CT, Emery P, Andrews J, Lanyon P, Hunter J, Gupta M, Bombardieri M, Sutcliffe N, Pitzalis C, McLaren J, Cooper A, Regan M, Giles I, Isenberg D, Vadivelu S, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Griffiths B, Ng WF; on behalf of the UK primary Sjögren's Syndrome Registry. Health-related utility values of patients with primary Sjogren's syndrome and its predictors. Ann Rheum Dis. 2013 Jun 12. [Epub ahead of print]
 

Ng WF, Stangroom AJ, Davidson A, Wilton K, Mitchell S, Newton JL. Primary Sjögrens Syndrome is associated with impaired autonomic response to orthostasis and early sympathetic failure. QJM 2012 Dec;105(12):1191-9.
 

Collins K, Mitchell S, Griffiths B, Bowman SJ, Ng WF on behalf of the United Kingdom primary Sjögren’s syndrome registry. Potential diagnostic utility of anti-centromere antibody in primary Sjögren’s syndrome in the UK. Clin Rheumatol. 2012;31:1147-8. Epub 2012 May 31.
 

Hackett KL, Newton JL, Frith J, Elliott C, Lendrem D, Foggo H, Edgar S, Mitchell S, Ng WF. Impaired functional status in primary Sjögren’s syndrome. Arthritis Care Res. 2012 Nov;64(11):1760-4.
 

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. Autonomic symptoms are common and are associated with overall symptom burden and disease activity in primary Sjögren’s syndrome. Ann Rheum Dis. 2012 Dec;71(12):1973-9.
 

Ng WF, Bowman SJ. United Kingdom primary Sjögren's syndrome registry (UKPSSR) – How should we evaluate its outcome? J Clin Rheumatol Musculoskeletal Med. 2012; volume 3, issue 1.
 

Ng WF, Bowman SJ, Griffiths B on behalf of the UKPSSR study group. United Kingdom primary Sjögren's syndrome registry (UKPSSR) - A united effort to tackle an orphan rheumatic disease. Rheumatology (Oxford).  2011 Jan;50(1):32-9.






Abstracts

2012
Vila J, Mitchell S, Bowman S, Price E, Pease CT, Emery P, Andrews J, Bombardieri M, Sutcliffe N, Pitzalis C, Lanyon P, Hunter J, Gupta M, McLaren J, Regan M, Cooper A, Giles I, Isenberg D, Vadivelu S, Coady D, Griffiths B, Lendrem D, Foggo H, Tarn J, Ng WF. The clinical relevance of anti-RO52 and anti-RO60 in patients in the united kingdom primary sjögren’s syndrome registry (UKPSSR). Rheumatology 2012;51(Suppl3):35

Lendrem D, Mitchell S, Bowman S, Price E, Pease CT, Emery P, Andrews J, Bombardieri M, Sutcliffe N, Pitzalis C, Lanyon P, Hunter J, Gupta M, McLaren J, Regan M, Cooper A, Giles I, Isenberg D, Griffiths B, Foggo H, Edgar S, Vadivelu S, Coady D, McHugh N, Ng WF. Evaluating health status of 620 patients with primary sjögren’s syndrome using EQ-5D. Rheumatology 2012;51(Suppl3):171

Lendrem D, Mitchell S, Bowman S, Price E, Pease CT, Emery P, Andrews J, Bombardieri M, Sutcliffe N, Pitzalis C, Lanyon P, Hunter J, Gupta M, McLaren J, Regan M, Cooper A, Giles I, Isenberg D, Vadivelu S, Coady D, McHugh N, Griffiths B, Foggo H, Edgar S, Ng WF. How good are the eular sjögren’s syndrome disease activity index, and eular sjögren’s syndrome patients reported index in predicting health status in primary sjögren’s syndrome?. Rheumatology 2012;51(Suppl3):176

W.-F. Ng, D. Lendrem, S. Mitchell, S. Bowman, E. Price, C. Pease, P. Emery, J. Andrews, M. Bombardieri, N. Sutcliffe, C. Pitzalis, P. Lanyon, J. Hunter, M. Gupta, J. McLaren, M. Regan, A. Cooper, I. Giles, D. Isenberg, S. Vadivelu, D. Coady, B. Griffiths, and United Kingdom Primary Sjogren's Syndrome Registry. EVALUATING HEALTH STATUS OF 620 PATIENTS WITH PRIMARY SJÖGREN'S SYNDROME USING EQ-5D. Ann Rheum Dis 2012;71(Suppl3):466

J. Tarn, S. Mitchell, S. Bowman, E. Price, C. Pease, N. Sutcliffe, P. Emery, J. Andrews, M. Bombardieri, C. Pitzalis, P. Lanyon, J. Hunter, M. Gupta, M. Regan, A. Cooper, I. Giles, D. Isenberg, D. Young, D. Lendrem, J. McLaren, C. Downie, H. Foggo, P. Stocks, S. Edgar, W.-F. Ng, and UK Primary Sjögren's Syndrome Registry. SERUM CYTOKINE AND CHEMOKINE PROFILING IN PRIMARY SJÖGREN'S SYNDROME. Ann Rheum Dis 2012;71(Suppl3):527

W.-F. Ng, S. Mitchell, D. Lendrem, S. Bowman, E. Price, C. Pease, P. Emery, J. Andrews, M. Bombardieri, N. Sutcliffe, C. Pitzalis, P. Lanyon, J. Hunter, M. Gupta, J. McLaren, M. Regan, A. Cooper, I. Giles, D. Isenberg, S. Vadivelu, D. Coady, B. Griffiths, on behalf of United Kingdom Primary Sjogren's Syndrome Registry. 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? Ann Rheum Dis 2012;71(Suppl3):553

J. Vila, K. Best, S. Mitchell, S. Bowman, D. Lendrem, H. Foggo, J. Tarn, W.-F. Ng, and UKPSSR Working Group. THE CLINICAL RELEVANCE OF ANTI-RO52 AND ANTI-RO60 IN PATIENTS IN THE UNITED KINGDOM PRIMARY SJOGREN'S SYNDROME REGISTRY (UKPSSR). Ann Rheum Dis 2012;71(Suppl3):677

Tarn J. SERUM CYTOKINE AND CHEMOKINE PROFILING IN PRIMARY SJÖGREN’S SYNDROME. In: Annual European Congress of Rheumatology EULAR 2012
2011
Lessard CJ, Adrianto I, Ice JA, Kelly JA, Jonsson R, Illei GG, Rischmueller M, Nordmark G, Mariette X, Miceli-Richard C, Herlenius MW, Witte T, Brennan MT, Omdal R, Gaffney PM, Lessard JA, Ng WF, Rhodus NL, Segal BM, Scofield RH, James JA, Anaya JM, Harley JB, Montgomery C, Moser KL. Large-Scale, High-Density Genotyping Performed by the Sjogren's Genetics Network Using the ImmunoChip Identifies PRKRA as a Novel Sjogren's Syndrome Susceptibility Locus and Confirms Associations with IRF5, BLK and MHC. In: Arthritis & Rheumatism: 75th Annual Scientific Meeting of the American College of Rheumatology. 2011, Chicago, Illinois, USA: John Wiley & Sons, Inc.

Dillon SP, Kao L, Kaufman KM, Ice JA, Omdal R, Mariette X, Witte T, Illei GG, Rischmueller M, Nordmark G, Jonsson R, Herlenius MW, Vyse TJ, Brennan MT, Rybicki BA, Ng WF, Segal BM, Rhodus NL, Merrill JT, Montgomery CG, Lessard CJ, Harley JB, Moser KL, Gaffney PM, Scofield RH. Triple X Syndrome (47,XXX) Increases the Risk and Accelerates the Onset of Systemic Lupus Erythematosus and Sjogren's Syndrome: Support for a Gene-Dose Effect From the X Chromosome. In: Arthritis & Rheumatism: 75th Annual Scientific Meeting of the American College of Rheumatology. 2011, Chicago, Illinois, USA: John Wiley & Sons, Inc.

Lessard CJ, Ice JA, Adrianto I, Kelly JA, Jonsson R, Illei GG, Rischmueller M, Nordmark G, Mariette X, Miceli-Richard C, Herlenius MW, Witte T, Brennan MT, Omdal R, Vyse TJ, Lessard JA, Ng WF, Rhodus NL, Segal BM, Scofield RH, Anaya JM, Harley JB, Montgomery CG, Moser KL, Benjamin A Rybicki ACCESS. A High-Density Genome-Wide Association Study by the Sjogren's Genetics Network Identifies Five Novel Susceptibility Loci for Primary Sjogren's Syndrome and Confirms Association with MHC, IRF5, and BLK. In: Arthritis & Rheumatism: 75th Annual Scientific Meeting of the American College of Rheumatology. 2011, Chicago, Illinois, USA: John Wiley & Sons, Inc.

Juarez MJ, Toms TE, Mitchell S, Bowman S, Ng WF, Price E, Kitas G, UKPRSSR. Prevalence of traditional cardiovascular risk factors in females with primary Sjogrens Syndrome. Rheumatology 2011;50(Suppl3):41

Newton J, Powell D, Mitchell S, Griffiths B, Bowman S, Ng WF, UK Primary Sjogren's Syndrome. Potentially treatable symptoms in primary Sjogren's Syndrome - Associated fatigue. Rheumatology 2011;50(Suppl3):104-5

W.-F. Ng, S. Bowman, B. Griffiths, S. Mitchell, E. Price, C. Pease, J. Andrews, P. Emery, M. Gupta, J. Hunter, M. Bombardieri, C. Pitzalis, N. Sutcliffe, M. Regan, J. McLaren, D. Coady, E. Kidd, I. Giles, D. Isenberg, A. Cooper, UKPSSR. RELATIONSHIP BETWEEN DISEASE ACTIVITY OF PRIMARY SJOGREN'S SYNDROME AND PATIENT REPORTED OUTCOME – DATA FROM AN INTERIM ANALYSIS OF THE UK PRIMARY SJÖGREN'S SYNDROME REGISTRY. Ann Rheum Dis 2011;70(Suppl3):510

M. Juarez, T. Toms, S. Mitchell, S. Bowman, W.-F. Ng, E. Price, G. Kitas, UKPSSR Study Group. INCREASED HYPERTENSION RISK IN PATIENTS WITH PRIMARY SJÖGREN'S SYNDROME, RESULTS FROM THE UKPSS REGISTRY. Ann Rheum Dis 2011;70(Suppl3):500

J. Newton, D. Powell, S. Mitchell, S. Bowman, B. Griffiths, W.-F. Ng, UK Primary Sjogren's Syndrome Registry. AUTONOMIC DYSFUNCTION AND SLEEP DISTURBANCE CORRELATE WITH SYMPTOMS OF FATIGUE IN PATIENTS WITH PRIMARY SJÖGREN'S SYNDROME. Ann Rheum Dis 2011;70(Suppl3):509

Funding Success

Anti-M3R antibodies, autonomic dysfunction and primary Sjögren’s syndrome. Arthritis Research UK. Smith P. et al. University of Liverpool
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
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
Epigenetic regulation of gene expression in primary Sjögren’s syndrome. Sir Jules Thorn Charitable Trust. Ng WF et al. Newcastle University
Feasibility study of a novel approach to determine the population prevalence of primary Sjögren’s syndrome. NIHR. Ng WF et al. Newcastle University
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

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 predictors 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.