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 - Last Updated 28th March, 2019

PubMed Results
Items 1 - 21 of 21    (Display the 21 citations in PubMed)

1.
How immunological profile drives clinical phenotype of primary Sjögren's syndrome at diagnosis: analysis of 10,500 patients (Sjögren Big Data Project).
Brito-Zerón P, Acar-Denizli N, Ng WF, Zeher M, Rasmussen A, Mandl T, Seror R, Li X, Baldini C, Gottenberg JE, Danda D, Quartuccio L, Priori R, Hernandez-Molina G, Armagan B, Kruize AA, Kwok SK, Kvarnström M, Praprotnik S, Sène D, Bartoloni E, Solans R, Rischmueller M, Suzuki Y, Isenberg DA, Valim V, Wiland P, Nordmark G, Fraile G, Bootsma H, Nakamura T, Giacomelli R, Devauchelle-Pensec V, Knopf A, Bombardieri M, Trevisani VF, Hammenfors D, Pasoto SG, Retamozo S, Gheita TA, Atzeni F, Morel J, Vollenveider C, Horvath IF, Sivils KL, Olsson P, De Vita S, Sánchez-Guerrero J, Kilic L, Wahren-Herlenius M, Mariette X, Ramos-Casals M; Sjögren Big Data Consortium.
Clin Exp Rheumatol. 2018 May-Jun;36 Suppl 112(3):102-112. Epub 2018 Aug 14.
PMID: 30156539 [PubMed - indexed for MEDLINE] Free Article
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2.
B-cell activity markers are associated with different disease activity domains in primary Sjögren's syndrome.
James K, Chipeta C, Parker A, Harding S, Cockell SJ, Gillespie CS, Hallinan J, Barone F, Bowman SJ, Ng WF, Fisher BA; UK Primary Sjögren’s Syndrome Registry.
Rheumatology (Oxford). 2018 Mar 28. doi: 10.1093/rheumatology/key063. [Epub ahead of print]
PMID: 29608774 [PubMed - as supplied by publisher] Free PMC Article
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3.
Systemic interferon type I and type II signatures in primary Sjögren's syndrome reveal differences in biological disease activity.
Bodewes ILA, Al-Ali S, van Helden-Meeuwsen CG, Maria NI, Tarn J, Lendrem DW, Schreurs MWJ, Steenwijk EC, van Daele PLA, Both T, Bowman SJ, Griffiths B, Ng WF; UK Primary Sjögren’s Syndrome registry, Versnel MA.
Rheumatology (Oxford). 2018 May 1;57(5):921-930. doi: 10.1093/rheumatology/kex490.
PMID: 29474655 [PubMed - indexed for MEDLINE]
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4.
Comparison of ESSDAI and ClinESSDAI in potential optimisation of trial outcomes in primary Sjögren's syndrome: examination of data from the UK Primary Sjögren's Syndrome Registry.
Dumusc A, Ng WF, James K, Griffiths B, Price E, Pease C, Emery P, Lanyon P, Jones A, Bombardieri M, Sutcliffe N, Pitzalis C, Gupta M, McLaren J, Cooper A, Giles I, Isenberg D, Saravanan V, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Barone F, Fisher B, Rauz S, Richards A, Bowman S.
Swiss Med Wkly. 2018 Feb 7;148:w14588. doi: 10.4414/smw.2018.14588. eCollection 2018.
PMID: 29442344 [PubMed - indexed for MEDLINE] Free Article
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5.
Mixed-Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sjögren's Syndrome Patients.
Hackett KL, Deane KHO, Newton JL, Deary V, Bowman SJ, Rapley T, Ng WF; United Kingdom Primary Sjögren's Syndrome Registry.
Arthritis Care Res (Hoboken). 2018 Jul;70(7):1064-1073. doi: 10.1002/acr.23536. Epub 2018 May 21.
PMID: 29409110 [PubMed - in process] Free PMC Article
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6.
Eligibility for clinical trials in primary Sjögren's syndrome: lessons from the UK Primary Sjögren's Syndrome Registry.
Oni C, Mitchell S, James K, Ng WF, Griffiths B, Hindmarsh V, Price E, Pease CT, Emery P, Lanyon P, Jones A, Bombardieri M, Sutcliffe N, Pitzalis C, Hunter J, Gupta M, McLaren J, Cooper A, Regan M, Giles I, Isenberg D, Saravanan V, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Barone F, Fisher B, Rauz S, Richards A, Bowman SJ.
Rheumatology (Oxford). 2017 Dec 1;56(12):2255. doi: 10.1093/rheumatology/kex331. No abstract available.
PMID: 28968900 [PubMed]
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7.
Identification of a Sjögren's syndrome susceptibility locus at OAS1 that influences isoform switching, protein expression, and responsiveness to type I interferons.
Li H, Reksten TR, Ice JA, Kelly JA, Adrianto I, Rasmussen A, Wang S, He B, Grundahl KM, Glenn SB, Miceli-Richard C, Bowman S, Lester S, Eriksson P, Eloranta ML, Brun JG, Gøransson LG, Harboe E, Guthridge JM, Kaufman KM, Kvarnström M, Cunninghame Graham DS, Patel K, Adler AJ, Farris AD, Brennan MT, Chodosh J, Gopalakrishnan R, Weisman MH, Venuturupalli S, Wallace DJ, Hefner KS, Houston GD, Huang AJW, Hughes PJ, Lewis DM, Radfar L, Vista ES, Edgar CE, Rohrer MD, Stone DU, Vyse TJ, Harley JB, Gaffney PM, James JA, Turner S, Alevizos I, Anaya JM, Rhodus NL, Segal BM, Montgomery CG, Scofield RH, Kovats S, Mariette X, Rönnblom L, Witte T, Rischmueller M, Wahren-Herlenius M, Omdal R, Jonsson R, Ng WF; for UK Primary Sjögren's Syndrome Registry, Nordmark G, Lessard CJ, Sivils KL.
PLoS Genet. 2017 Jun 22;13(6):e1006820. doi: 10.1371/journal.pgen.1006820. eCollection 2017 Jun.
PMID: 28640813 [PubMed - indexed for MEDLINE] Free PMC Article
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8.
Physical activity but not sedentary activity is reduced in primary Sjögren's syndrome.
Ng WF, Miller A, Bowman SJ, Price EJ, Kitas GD, Pease C, Emery P, Lanyon P, Hunter J, Gupta M, Giles I, Isenberg D, McLaren J, Regan M, Cooper A, Young-Min SA, McHugh N, Vadivelu S, Moots RJ, Coady D, MacKay K, Dasgupta B, Sutcliffe N, Bombardieri M, Pitzalis C, Griffiths B, Mitchell S, Miyamoto ST, Trenell M; UK Primary Sjögren’s Syndrome Registry.
Rheumatol Int. 2017 Apr;37(4):623-631. doi: 10.1007/s00296-016-3637-6. Epub 2016 Dec 24.
PMID: 28013357 [PubMed - indexed for MEDLINE] Free PMC Article
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9.
Subjective and Objective Measures of Dryness Symptoms in Primary Sjögren's Syndrome: Capturing the Discrepancy.
Bezzina OM, Gallagher P, Mitchell S, Bowman SJ, Griffiths B, Hindmarsh V, Hargreaves B, Price EJ, Pease CT, Emery P, Lanyon P, Bombardieri M, Sutcliffe N, Pitzalis C, Hunter J, Gupta M, McLaren J, Cooper AM, Regan M, Giles IP, Isenberg DA, Saravanan V, Coady D, Dasgupta B, McHugh NJ, Young-Min SA, Moots RJ, Gendi N, Akil M, MacKay K, Ng WF, Robinson LJ; UK Primary Sjögren's Syndrome Registry.
Arthritis Care Res (Hoboken). 2017 Nov;69(11):1714-1723. doi: 10.1002/acr.23165. Epub 2017 Oct 9.
PMID: 27992710 [PubMed - indexed for MEDLINE] Free PMC Article
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10.
Fatigue in primary Sjögren's syndrome is associated with lower levels of proinflammatory cytokines.
Howard Tripp N, Tarn J, Natasari A, Gillespie C, Mitchell S, Hackett KL, Bowman SJ, Price E, Pease CT, Emery P, Lanyon P, Hunter J, Gupta M, Bombardieri M, Sutcliffe N, Pitzalis C, McLaren J, Cooper A, Regan M, Giles I, Isenberg DA, Saravanan V, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Griffiths B, Lendrem DW, Ng WF.
RMD Open. 2016 Jul 19;2(2):e000282. doi: 10.1136/rmdopen-2016-000282. eCollection 2016.
PMID: 27493792 [PubMed] Free PMC Article
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11.
A Transcriptional Signature of Fatigue Derived from Patients with Primary Sjögren's Syndrome.
James K, Al-Ali S, Tarn J, Cockell SJ, Gillespie CS, Hindmarsh V, Locke J, Mitchell S, Lendrem D, Bowman S, Price E, Pease CT, Emery P, Lanyon P, Hunter JA, Gupta M, Bombardieri M, Sutcliffe N, Pitzalis C, McLaren J, Cooper A, Regan M, Giles I, Isenberg D, Saravanan V, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Griffiths B; UK Primary Sjögren’s Syndrome registry, Wipat A, Newton J, Jones DE, Isaacs J, Hallinan J, Ng WF.
PLoS One. 2015 Dec 22;10(12):e0143970. doi: 10.1371/journal.pone.0143970. eCollection 2015.
PMID: 26694930 [PubMed - indexed for MEDLINE] Free PMC Article
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12.
Eligibility for clinical trials in primary Sjögren's syndrome: lessons from the UK Primary Sjögren's Syndrome Registry.
Oni C, Mitchell S, James K, Ng WF, Griffiths B, Hindmarsh V, Price E, Pease CT, Emery P, Lanyon P, Jones A, Bombardieri M, Sutcliffe N, Pitzalis C, Hunter J, Gupta M, McLaren J, Cooper A, Regan M, Giles I, Isenberg D, Saravanan V, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Barone F, Fisher B, Rauz S, Richards A, Bowman SJ; UK Primary Sjögren’s Syndrome Registry.
Rheumatology (Oxford). 2016 Mar;55(3):544-52. doi: 10.1093/rheumatology/kev373. Epub 2015 Oct 27. Erratum in: Rheumatology (Oxford). 2017 Dec 1;56(12 ):2255.
PMID: 26510429 [PubMed - indexed for MEDLINE] Free PMC Article
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13.
Do the EULAR Sjögren's syndrome outcome measures correlate with health status in primary Sjögren's syndrome?
Lendrem D, Mitchell S, McMeekin P, Gompels L, Hackett K, 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, Saravanan V, Coady D, Dasgupta B, McHugh N, Young-Min S, Moots R, Gendi N, Akil M, Griffiths B, Ng WF; UK primary Sjögren’s Syndrome Registry.
Rheumatology (Oxford). 2015 Apr;54(4):655-9. doi: 10.1093/rheumatology/keu361. Epub 2014 Sep 19.
PMID: 25240612 [PubMed - indexed for MEDLINE] Free Article
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14.
Cardiovascular risk factors in women with primary Sjögren's syndrome: United Kingdom primary Sjögren's syndrome registry results.
Juarez M, Toms TE, de Pablo P, Mitchell S, Bowman S, Nightingale P, Price EJ, Griffiths B, Hunter J, Gupta M, Bombardieri M, Sutdliffe N, Pitzalis C, Pease C, Andrews J, Emery P, Regan M, Giles I, Isenberg D, Moots R, Collins KS, Ng WF, Kitas GD; UK Primary Sjögren’s Syndrome Registry.
Arthritis Care Res (Hoboken). 2014 May;66(5):757-64.
PMID: 24877201 [PubMed - indexed for MEDLINE] Free PMC Article
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15.
Variants at multiple loci implicated in both innate and adaptive immune responses are associated with Sjögren's syndrome.
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 ML, Brun JG, Gøransson LG, Harboe E, Guthridge JM, Kaufman KM, Kvarnström M, Jazebi H, Cunninghame Graham DS, Grandits ME, Nazmul-Hossain AN, Patel K, Adler AJ, Maier-Moore JS, Farris AD, Brennan MT, Lessard JA, Chodosh J, Gopalakrishnan R, Hefner KS, Houston GD, Huang AJ, 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; UK Primary Sjögren's Syndrome Registry, Mariette X, Anaya JM, Rhodus NL, Segal BM, Scofield RH, Montgomery CG, Harley JB, Sivils KL.
Nat Genet. 2013 Nov;45(11):1284-92. doi: 10.1038/ng.2792. Epub 2013 Oct 6.
PMID: 24097067 [PubMed - indexed for MEDLINE] Free PMC Article
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16.
Association of genes in the NF-κB pathway with antibody-positive primary Sjögren's syndrome.
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 ML, Syvänen AC; UK Primary Sjögren’s Syndrome Registry.
Scand J Immunol. 2013 Nov;78(5):447-54. doi: 10.1111/sji.12101.
PMID: 23944604 [PubMed - indexed for MEDLINE] Free Article
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17.
Health-related utility values of patients with primary Sjögren's syndrome and its predictors.
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; UK primary Sjögren's Syndrome Registry.
Ann Rheum Dis. 2014 Jul;73(7):1362-8. doi: 10.1136/annrheumdis-2012-202863. Epub 2013 Jun 12.
PMID: 23761688 [PubMed - indexed for MEDLINE]
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18.
Primary Sjogrens syndrome is associated with impaired autonomic response to orthostasis and sympathetic failure.
Ng WF, Stangroom AJ, Davidson A, Wilton K, Mitchell S, Newton JL.
QJM. 2012 Dec;105(12):1191-9. doi: 10.1093/qjmed/hcs172. Epub 2012 Sep 13.
PMID: 22976617 [PubMed - indexed for MEDLINE] Free PMC Article
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19.
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; United Kingdom Primary Sjögren's Syndrome Registry.
Clin Rheumatol. 2012 Jul;31(7):1147-8. doi: 10.1007/s10067-012-2005-5. Epub 2012 May 31. No abstract available.
PMID: 22648094 [PubMed - indexed for MEDLINE]
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20.
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; UK primary Sjögren's syndrome registry.
Ann Rheum Dis. 2012 Dec;71(12):1973-9. doi: 10.1136/annrheumdis-2011-201009. Epub 2012 May 5.
PMID: 22562982 [PubMed - indexed for MEDLINE] Free PMC Article
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21.
United Kingdom Primary Sjogren's Syndrome Registry--a united effort to tackle an orphan rheumatic disease.
Ng WF, Bowman SJ, Griffiths B; UKPSSR study group.
Rheumatology (Oxford). 2011 Jan;50(1):32-9. doi: 10.1093/rheumatology/keq240. Epub 2010 Aug 6. Review.
PMID: 20693261 [PubMed - indexed for MEDLINE]
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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.


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