United Kingdom Primary Sjogren's Syndrome Registry (UKPSSR)

Lead Research Organisation: Newcastle University
Department Name: Institute of Cellular Medicine

Abstract

Primary Sjogren s syndrome (PSS) is a chronic condition that affect up to 3% of adults in the United Kingdom (UK). Although the commonest symptoms of PSS are dry eye, dry mouth, joint pain and profound fatigue, almost any part of the body can be affected. Moreover, PSS is associated with 40 times higher risk of developing lymphoma (a form of cancer). Patients with PSS also have poor quality of life and a significant proportion of PSS patients are unable to work because of their disease. Unfortunately, we know very little about what causes PSS and we have not found any effective treatment. However, several recent developments in PSS research have created a platform for finding new treatment for PSS and improving our understanding of the underlying disease processes of PSS. Firstly, the UK Sjogren?s Interest Group (UKSIG) have developed standardised methods to assess patients with PSS, so that we can test how good a specific treatment is and make comparison with other treatments. Secondly, a number of promising therapies for PSS have been developed in the last few years. Thirdly, emerging new research technologies offer new approaches in PSS research. The aim of this project is to capitalise on these recent developments by creating a database of 500 patients with PSS over a period of 3 years so that new treatments for PSS can be tested more quickly and efficiently and clinical studies can be carried out more effectively. We need so many patients because not all patients are suitable for all studies. We will assess the patients using the standardised methods mentioned earlier and blood samples from these patients will be stored for future research. Patients will be recruited from 24 hospitals across the UK and the assessment will be carried out at the local clinics. This is a UKSIG project, co-ordinated by doctors from Newcastle University, the Freeman Hospital and University Hospital of Birmingham. Many doctors involved in this project have participated in previous multi-centre studies organised by the UKSIG. The proposed database will provide a unique and valuable resource for clinical and academic studies as well as for identifying suitable patients for clinical trials. The database will make it quicker and easier to organise these studies. Furthermore, this project will encourage collaborative research between academia, National Health Service and industry, and will promote the use of standardised assessments in the management of patients with PSS.

Technical Summary

Primary Sjogren s syndrome (PSS) is a chronic multi-system disease that affect up to 3% of adults in the United Kingdom. Although sicca symptoms, joint pain and fatigue are the commonest symptoms of PSS, almost any organs can be affected and there is a 40-fold increased risk of developing lymphoma. However, little is known regarding the pathogenesis and effective treatment has not been identified. The recent development of standardised outcome measures by the UK Sjogren‘s Interest Group (UKSIG) and others have generated criteria by which the effectiveness of specific therapy can be judged and compared. Furthermore, emerging biological treatments, notably anti-B cell therapies, have shown promising results in improving fatigue, sicca symptoms and systemic features of PSS. These recent developments have provided the framework for testing new therapies in PSS and performing other clinical studies. The aim of this project is to create a cohort of 500 well-characterised PSS patients in order to facilitate such proof-of-concept clinical trials, observational and longitudinal studies in PSS. 500 patients is required because not all patients are suitable for all studies. PSS patients will be identified from existing databases of the 24 collaborating hospitals. After obtaining written consent, patients will be assessed for severity of the key symptoms, disease activity and organ damage and health-related quality of life. These assessments include patient-completed questionnaires, physical examination, bedside clinical tests, laboratory tests of peripheral blood and urine. All assessments will be completed in a single outpatient visit, and all laboratory tests are readily available in all recruiting hospitals. In addition, we will store serum, DNA and RNA samples from patients for future studies. We will develop a database software specifically for this registry. All clinical data and biological materials will be stored in anonymised-linked format. The proposed registry wilprovide a unique and valuable resource for clinical and academic studies as well as for identifying suitable patients for clinical trials and other clinical studies. The creation of a well-characterised cohort of PSS patients will significantly reduce the cost of screening patients for these studies and will increase the appeal for sponsorship from industry for these proof-of-concept studies. This project will also foster collaborative research between academia, National Health Service (NHS) and industry, and promote the use of standardised assessment tools in managing patients with PSS. Finally, since this cohort will be the largest of its kind, it will also generate invaluable epidemiological data.

Publications

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Bowman SJ (2012) Biologic therapies in primary Sjögren's syndrome. in Current pharmaceutical biotechnology

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Brito-Zerón P (2016) Early diagnosis of primary Sjögren's syndrome: EULAR-SS task force clinical recommendations. in Expert review of clinical immunology

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Carr AJ (2012) Sjögren's syndrome - an update for dental practitioners. in British dental journal

 
Description Committee member of the BSR Management Guideline development group for primary Sjogren's syndrome
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Invited to join the Outcome Measures Online Training Advisory Committee
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Invited to join the Sjogren's Syndrome Foundation Clinical Trial Consortium (US)
Geographic Reach North America 
Policy Influence Type Participation in a advisory committee
 
Description Leader of the Working Party on Quality Standards of Care for Primary Sjogren's Syndrome
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description Led to the appointment of the first UK NIHR Academic clinica fellow in dental radiology
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Steering committee on European League Against Rheumatism best practise guidelines on the management of Sjogren's syndrome
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guidance committee
 
Description ARC Project Grant
Amount £125,701 (GBP)
Organisation Versus Arthritis 
Start  
 
Description Arthritis Research UK clinical trial
Amount £950,000 (GBP)
Organisation Versus Arthritis 
Start  
 
Description Arthritis Research UK project grant
Amount £159,609 (GBP)
Funding ID 21183 
Organisation Versus Arthritis 
Start 05/2016 
End 10/2017
 
Description Arthritis Research UK project grant
Amount £160,000 (GBP)
Funding ID 21183 
Organisation Versus Arthritis 
Start 05/2016 
End 11/2017
 
Description British Sjogren Syndrome Association project grant
Amount £25,000 (GBP)
Organisation British Sjogren's Syndrome Association 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2014 
End 03/2019
 
Description British Sjogren's Syndrome Association Project Grant
Amount £10,000 (GBP)
Organisation British Sjogren's Syndrome Association 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2010 
End 09/2013
 
Description Capital Investment in Human Tissue Banking and Linked Data, in Partnership with Charities
Amount £1,700,000 (GBP)
Funding ID MR/R014191/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 09/2017 
End 03/2021
 
Description Centre Grant
Amount £150,000 (GBP)
Funding ID 20018 
Organisation Versus Arthritis 
Start 07/2015 
End 06/2017
 
Description Centre Grant
Amount £225,000 (GBP)
Organisation Versus Arthritis 
Start 07/2012 
End 06/2015
 
Description Doctoral Training Fellowship
Amount £177,122 (GBP)
Funding ID 20169 
Organisation Versus Arthritis 
Start 04/2013 
End 03/2017
 
Description EU IMI
Amount € 8,000,000 (EUR)
Organisation European Commission 
Department Innovative Medicines Initiative (IMI)
Sector Multiple
Country European Union (EU)
Start 01/2019 
End 12/2024
 
Description Horizon2020
Amount € 10,000,000 (EUR)
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 01/2017 
End 06/2020
 
Description Identifying objective assessment of fatigue
Amount £250,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 04/2018 
End 03/2021
 
Description JGWP Foundation Trust project grant
Amount £48,000 (GBP)
Organisation The JGW Patterson Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 05/2014 
End 07/2015
 
Description MRC Biological mechanisms of CFS/ME initiative
Amount £445,000 (GBP)
Funding ID MR/J002720/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 07/2012 
End 07/2015
 
Description MRC Confidence in Concept
Amount £48,610 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 08/2015 
End 01/2016
 
Description MRC project grant
Amount £593,550 (GBP)
Funding ID MR/P002005/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 09/2016 
End 08/2019
 
Description Medical Student Bursary
Amount £1,500 (GBP)
Organisation Newcastle University 
Sector Academic/University
Country United Kingdom
Start 09/2011 
End 09/2012
 
Description NIHR Flexibility and sustainability fund
Amount £48,750 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 09/2012 
End 08/2013
 
Description Precision Type I interferon biomarker for the stratification of autoimmune disease
Amount £150,000 (GBP)
Funding ID 22076 
Organisation Versus Arthritis 
Start 09/2018 
End 03/2020
 
Description Project grant
Amount £52,884 (GBP)
Organisation The JGW Patterson Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2016 
End 09/2017
 
Description Project grant
Amount £5,000 (GBP)
Organisation Sir Samuel Scott of Yews Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2012 
End 09/2013
 
Description Proximity to Discovery
Amount £100,000 (GBP)
Funding ID MC_PC_16080 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 03/2017 
End 08/2018
 
Description Proximity to Discovery
Amount £250,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 07/2015 
End 12/2016
 
Description Sir Jules Thorn PhD Scholarship
Amount £78,580 (GBP)
Organisation Sir Jules Thorn Charitable Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2011 
End 01/2014
 
Description Stratified Medicine
Amount € 600,000 (EUR)
Organisation Foreum 
Sector Charity/Non Profit
Country Switzerland
Start 08/2018 
End 07/2021
 
Title A large genowide expression datasets 
Description Using the biological samples from the UKPSSR, we have now generated data on whole genome expression analyses of whole blood samples from over 300 PSS patients and around 50+ healthy controls. 
Type Of Material Biological samples 
Year Produced 2016 
Provided To Others? Yes  
Impact The data were generated in two phases. The data from phase 1 have been published and deposited in the GEO database which is accessible to the public (accession number GSE66795) The phase 2 data are currently being used for our own study and in another study in collaboration with a research group in France. We are expecting to publish the data in the near future. 
 
Title Newcastle Sjogren's syndrome stratification tool 
Description This tool enables clinicians and researchers to sub classify patients with primary Sjogren's syndrome with 4 distinct subtypes - each with different clinical features and distinct biological profiles and response to different therapies. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2018 
Provided To Others? No  
Impact The manuscript is currently under peer-review, once accepted for publication, it will be made available for researchers 
 
Title UKPSSR biological materials 
Description Serum, DNA, RNA, PBMC 
Type Of Material Biological samples 
Year Produced 2010 
Provided To Others? Yes  
Impact Serum samples were sent to Liverpool University for the study of a novel autoantibody in primary Sjogren's syndrome - study ongoing DNA samples were sent to Oklahoma Medical Research Foundation for a genome-wide association study in primary Sjogren's syndrome. Various other biological samples have subsequently been sent to several other collaborative partners including industrial partners. It has led to 15 peer-reviewed publication, additional grant funding, some of the studies are ongoing 
 
Title UK primary Sjogren's syndrome registry 
Description Collection of >750 clinically well-characterised patients with associated biobanked samples 
Type Of Material Database/Collection of data 
Year Produced 2010 
Provided To Others? Yes  
Impact By 2014, it has led to 15 peer-reviewed publications, leveraged additional research funding and many new research collaborations. 
URL http://www.sjogrensregistry.org
 
Description Anti-M3R antibodies, autonomic dysfunction and primary Sjogren's syndrome 
Organisation University of Liverpool
Department School of Dental Sciences Liverpool
Country United Kingdom 
Sector Academic/University 
PI Contribution Established the collaboration, contribute the grant application which was awarded by the arc. Organise samples from the cohort to be sent to collaborations for the study. Recruitment from the cohort to take part in the study. Both PI and Co-I Bowman are co-investigators of this project.
Collaborator Contribution Promote cohort utilisation and foster collaboration between researchers with an interest in primary Sjogren's syndrome
Impact Recruitment has now been completed. The data are being analysed for publication
Start Year 2009
 
Description CV risk in primary Sjogren's syndrome 
Organisation The Dudley Group NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution Data collection, recruitment, and prepare grant application which was awarded by the British Sjogren's syndrome association. This project is led by the PI of the UKPSSR.
Collaborator Contribution Promote the utilisation of the cohort and foster collaborative link between researchers with an interest in primary SJogren's syndrome research
Impact We have obtained a favourable opinion from the REC, and the study has been adopted into the NIHR portfolio. Recruitment has now been completed for PSS patients, recruitment for healthy controls ongoing. Preliminary analysis being written up for publication.
Start Year 2009
 
Description Candidate gene association study in primary Sjogren's syndrome 
Organisation Uppsala University
Department Rheumatology
Country Sweden 
Sector Academic/University 
PI Contribution We contribute the biobanked DNA samples and clinical data for this study.
Collaborator Contribution Utilization of the UKPSSR biobanked DNA samples and accompanied clinical data
Impact All the required samples have been sent, data are being analyzed.
Start Year 2011
 
Description Clinical utility of ultrasound in the diagnosis and management of primary Sjogren's syndrome 
Organisation Newcastle University
Department School of Dental Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution The PI is the academic supervisor of the newly appointed NIHR Academic clinical fellow (ACF) in dental radiology. This is the first dental radiology ACF ever been appointed in the UK
Collaborator Contribution Establish new collaboration and new area of research
Impact The ACF has started his post in November 2011, in the next 12-month, we will be generating high quality pilot data for making a Clinical Training Fellowship application for a PhD.
Start Year 2011
 
Description Development of a user-informed invention to improve the function of primary Sjogren's syndrome patients 
Organisation Northumbria University
Country United Kingdom 
Sector Academic/University 
PI Contribution provide intellectual input on study design, using UKPSSR data for inviting partient to participating in this study
Collaborator Contribution Assistance in data analysis and non-pharmacologica aspect of intervention development
Impact Partnership has only just started
Start Year 2013
 
Description Dissecting the possible infective links in primary Sjögren's syndrome 
Organisation Columbia University Medical Center
Department Division of Infectious Diseases
Country United States 
Sector Academic/University 
PI Contribution PI of the UKPSSR initiated the collaboration, utilisation of the biobanked smaples
Collaborator Contribution Develop novel area of research, utilisation of biobanked samples
Impact We are currently collecting additional samples according to the collaborators recommendation
Start Year 2011
 
Description EULAR Sjogren's Syndrome Management Guideline Steering group 
Organisation The European League Against Rheumatism (EULAR)
Country Switzerland 
Sector Charity/Non Profit 
PI Contribution Provide expertise in Sjogren's syndrome
Collaborator Contribution Provide expertise in Sjogren's syndrome and to coordinate opinions from participating members to construct a consensus guideline
Impact Only recently started
Start Year 2014
 
Description Epigenetic regulation of gene expression in primary Sjögren's syndrome 
Organisation Newcastle University
Department Institute of Cellular Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution PI of the UKPSSR is also PI of this project, who contribute to the design and management of this project.
Collaborator Contribution Utilisation of the biobanked samples and clinical data of the cohort. Also develop new area of research
Impact This is a PhD studentship in year 1 of the project.
Start Year 2011
 
Description Identifying the biological signature of fatigue 
Organisation Great Western Hospitals NHS Foundation Trust
Department Rheumatology Department Great Western Hospitals
Country United Kingdom 
Sector Public 
PI Contribution PI of the UKPSSR conceptualizes this project, the biobanked data and samples of the UKPSSR will be used for this project
Collaborator Contribution Patient recruitmentPatient recruitmentExpertise in bioinformaticData analysisPatient recruitment
Impact Project been awarded recently, to be started in early 2012
Start Year 2011
 
Description Identifying the biological signature of fatigue 
Organisation Newcastle University
Department Institute for Ageing and Health
Country United Kingdom 
Sector Academic/University 
PI Contribution PI of the UKPSSR conceptualizes this project, the biobanked data and samples of the UKPSSR will be used for this project
Collaborator Contribution Patient recruitmentPatient recruitmentExpertise in bioinformaticData analysisPatient recruitment
Impact Project been awarded recently, to be started in early 2012
Start Year 2011
 
Description Identifying the biological signature of fatigue 
Organisation Newcastle University
Department Institute for Cell and Molecular Biosciences
Country United Kingdom 
Sector Academic/University 
PI Contribution PI of the UKPSSR conceptualizes this project, the biobanked data and samples of the UKPSSR will be used for this project
Collaborator Contribution Patient recruitmentPatient recruitmentExpertise in bioinformaticData analysisPatient recruitment
Impact Project been awarded recently, to be started in early 2012
Start Year 2011
 
Description Identifying the biological signature of fatigue 
Organisation Newcastle University
Department School of Computing Science
Country United Kingdom 
Sector Academic/University 
PI Contribution PI of the UKPSSR conceptualizes this project, the biobanked data and samples of the UKPSSR will be used for this project
Collaborator Contribution Patient recruitmentPatient recruitmentExpertise in bioinformaticData analysisPatient recruitment
Impact Project been awarded recently, to be started in early 2012
Start Year 2011
 
Description Identifying the biological signature of fatigue 
Organisation University Hospitals Birmingham NHS Foundation Trust
Department Rheumatology University Hospitals Birmingham
Country United Kingdom 
Sector Public 
PI Contribution PI of the UKPSSR conceptualizes this project, the biobanked data and samples of the UKPSSR will be used for this project
Collaborator Contribution Patient recruitmentPatient recruitmentExpertise in bioinformaticData analysisPatient recruitment
Impact Project been awarded recently, to be started in early 2012
Start Year 2011
 
Description Metabolomic signatures in Primary Sjogren's syndrome 
Organisation University of Oxford
Department Centre for Cellular and Molecular Physiology
Country United Kingdom 
Sector Academic/University 
PI Contribution PI contribute to the design and conceptualisation of the project. We contribute also the biobanked serum samples and clinical data
Collaborator Contribution Establish new collaboration and novel area of research. Utilisation of the biobanked serum samples and clinical data
Impact We are currently analyzing the pilot data, and in preparation for a grant application to extend the work.
Start Year 2011
 
Description Oklahoma Sjögren's Syndrome Centre of Research Translation 
Organisation Oklahoma Medical Research Foundation (OMRF)
Department Autoimmune Research Group
Country United States 
Sector Charity/Non Profit 
PI Contribution The UKPSSR is a key collaboration partner for this 5-year centre grant (US$1.6 million) funded by the National Institution of Health, US. The collaboration agreement involves us continue our contribution of biobanked samples and clinical data for appropriate research projects into Sjogren's syndrome
Collaborator Contribution This collaboration strengthens our partnership with Oklahoma Medical Research Foundation which we have established in the Sjogren's genetic Network project.
Impact Research project still ongoing
Start Year 2011
 
Description RCT of rituximab in primary Sjogren's syndrome 
Organisation Queen Mary University of London
Department Barts and The London School of Medicine and Dentistry
Country United Kingdom 
Sector Academic/University 
PI Contribution Co-I of this project is the PI of this clinical trial. The clinical data of the cohort is being used to select participation centres and potential patients.
Collaborator Contribution Utilisation of the cohort, promote collaboration between researchers with an interest in primary Sjogren's syndromeUtilisation of the cohort data for patient selection
Impact Recruitment has started in August 2011 with a recruitment period of 2 years. This study aims to study 110 patient
Start Year 2009
 
Description RCT of rituximab in primary Sjogren's syndrome 
Organisation University of Leeds
Department Leeds Clinical Trials Unit
Country United Kingdom 
Sector Academic/University 
PI Contribution Co-I of this project is the PI of this clinical trial. The clinical data of the cohort is being used to select participation centres and potential patients.
Collaborator Contribution Utilisation of the cohort, promote collaboration between researchers with an interest in primary Sjogren's syndromeUtilisation of the cohort data for patient selection
Impact Recruitment has started in August 2011 with a recruitment period of 2 years. This study aims to study 110 patient
Start Year 2009
 
Description Reseach Collaboration_ Resolve 
Organisation Resolve Therapeutics, LLC
PI Contribution Clinical and Scientific expertise, clinical trial design, serving as Chief Investigator and recruitment of patients to a phase 2 clinical trial in Sjogren's syndrome sponsored by the company
Collaborator Contribution Sponsor of the clinical trials and funding of the exploratory research projects using the clinical samples collected from clinical trial participants
Impact Clinical trial ongoing
Start Year 2017
 
Description Research Collaboration - Interferon signature in PSS 
Organisation Erasmus University Medical Center
Country Netherlands 
Sector Academic/University 
PI Contribution Providing samples for research and contribute to research design, data analysis and interpretation
Collaborator Contribution Conducting experiments
Impact Publications
Start Year 2014
 
Description Research Collaboration - identify miRNA biomarkers in PSS-associated lymphoma 
Organisation Uppsala University
Country Sweden 
Sector Academic/University 
PI Contribution Performing research
Collaborator Contribution Providing samples
Impact Potential biomarker
Start Year 2014
 
Description Research Collaboration_ MedImmune 
Organisation MedImmune
Country United States 
Sector Private 
PI Contribution Provide clinical and scientific expertise as well as clinical and associated research data derived from corresponding biobanked samples
Collaborator Contribution Data analysis
Impact Project only just started, no outcome to report yet
Start Year 2018
 
Description Research Collaboration_GSK (UKPSSR data) 
Organisation GlaxoSmithKline (GSK)
Country Global 
Sector Private 
PI Contribution Clinical and scientific expertise and anonymised clinical datasets
Collaborator Contribution Epidemiological and health economic expertise
Impact Project ongoing
Start Year 2017
 
Description Research Collaboration_Novartis 
Organisation Novartis
Country Global 
Sector Private 
PI Contribution Provision of clinical/scientific expertise and anonymised clinical data
Collaborator Contribution Data analysis
Impact Only began recently.
Start Year 2017
 
Description Research Grant application 
Organisation University of Stavanger
Department Immunology
Country Norway 
Sector Academic/University 
PI Contribution Provide biobanked DNA and serum samples for the research project, if the application to the Norwegian Research Council is successful
Collaborator Contribution Conduct the experiments described in the grant application
Impact Awaiting outcome of the application
Start Year 2012
 
Description Research collaboration 
Organisation The Binding Site
Country Global 
Sector Private 
PI Contribution Provide biobanked serum sample and anonymised clinical data for the research project
Collaborator Contribution Analyse the samples for the agreed analytes of interest and provide support in data analysis. All raw data generated will be returned to the UKPSSR for storage and future use
Impact Analysis complete, preparing manuscript for publication
Start Year 2012
 
Description Research collaboration - exploratory study 
Organisation ElectroCore LLC
Country United States 
Sector Private 
PI Contribution Carry our the research activity
Collaborator Contribution provide the device for the research free of charge
Impact Research project has not commenced yet as awaiting full regulatory approval
Start Year 2016
 
Description Research collaboration - new target validation 
Organisation Nascient ltd
Country Unknown 
Sector Private 
PI Contribution Perform target validation on biobanked samples
Collaborator Contribution Financial and the candidate target to be tested
Impact Our pilot work has confirm the presence of the target in the biobanked samples. We are now in discussion of validating the findings using a bigger sample size
Start Year 2016
 
Description Research collaboration - validation of Stratified Medicine 
Organisation University Paris Sud
Country France 
Sector Academic/University 
PI Contribution Generate original data
Collaborator Contribution Provide anonymised data for validation
Impact Oral presentation at American College of Rheumatology Annual Conference and Won the best abstract prize in Sjogren's syndrome
Start Year 2016
 
Description Research collaboration - validation of Stratified Medicine 
Organisation University of Stavanger
Country Norway 
Sector Academic/University 
PI Contribution Generate original data
Collaborator Contribution Provide anonymised data for validation
Impact Oral presentation at American College of Rheumatology Annual Conference and Won the best abstract prize in Sjogren's syndrome
Start Year 2016
 
Description Research collaboration - validation of Stratified Medicine 
Organisation University of Strasbourg
Country France 
Sector Academic/University 
PI Contribution Generate original data
Collaborator Contribution Provide anonymised data for validation
Impact Oral presentation at American College of Rheumatology Annual Conference and Won the best abstract prize in Sjogren's syndrome
Start Year 2016
 
Description Research collaboration _ Abbvie 
Organisation AbbVie Inc
Country Global 
Sector Private 
PI Contribution We provide scientific expertise and well-characterised clinical samples for target discovery
Collaborator Contribution Data and sample analysis
Impact Collaboration only started recently, no output yet.
Start Year 2017
 
Description Research collaboration_GSK 
Organisation GlaxoSmithKline (GSK)
Country Global 
Sector Private 
PI Contribution Provision of clinical and scientific expertise, anonymoised clinical data and biobanked samples
Collaborator Contribution Analysis of data and biobanked samples
Impact Project ongoing
Start Year 2017
 
Description Sjogren's Genetic Network 
Organisation Oklahoma Medical Research Foundation (OMRF)
Department Autoimmune Research Group
Country United States 
Sector Charity/Non Profit 
PI Contribution Provide biological samples and associated clinical data for the genome-wide association study and other subsequent validation studies. In addition, our collaboration has play a key role for the collaborator group's success in securing a NIH centre grant of over US$1.6 million
Collaborator Contribution Utilisation of biological samples of the UKPSSR, and will be co-author on any data published using the samples
Impact Publication of the first phase of the GWAS study in Nature Genetics in 2013. We were the single largest provider of Sjogren's DNA samples and data.
Start Year 2010
 
Description The prevalence and predictor of autonomic dysfunction in primary Sjögren's syndrome 
Organisation Newcastle University
Department Institute for Ageing and Health
Country United Kingdom 
Sector Academic/University 
PI Contribution The clinical data of the cohort were utilized for this study, PI of the UKPSSR contribute to the design and data analysis
Collaborator Contribution Utilisation of the cohort data
Impact Manuscript submitted to a peer-reviewed scientific journal
Start Year 2010
 
Description Validation of European primary Sjögren's syndrome disease activity index and patient reported index study 
Organisation The European League Against Rheumatism (EULAR)
Country Switzerland 
Sector Charity/Non Profit 
PI Contribution Utilisation of the cohort. One of the Co-Is is a member of the steering committee of this project.
Collaborator Contribution Widening our collaborative network with our European collaegues, and utilisation of the UKPSSR cohort
Impact Recruitment has been completed, data analysis ongoing
Start Year 2010
 
Title UK primary Sjogren's syndrome registry 
Description Annoymised clinical data collected for the UK primary Sjogren's syndrome registry 
IP Reference  
Protection Protection not required
Year Protection Granted
Licensed Commercial In Confidence
Impact The data have been licensed to two pharmaceutical company for their internal use. Data have only been released to the organisations recently so currently uncertain of the impact.
 
Title Newcastle Sjogren's syndrome Stratification Tool 
Description This enable researchers and clinicians to stratify patients with primary Sjogren's syndrome into 4 phenotypes with distinct clinical and biological profiles. 
Type Support Tool - For Fundamental Research
Current Stage Of Development Initial development
Year Development Stage Completed 2018
Development Status Under active development/distribution
Impact This stratification tool can potentially impact on future clinical trial design, therapeutic development and management of patients with primary Sjogren's syndrome 
 
Title microRNA biomarker for primary Sjogren's syndrome related lymphoma 
Description We have identified a whole blood microRNA signature with good sensitivity and specificity for Sjogren's syndrome patients with lymphoma, we are currently taking advice from our business development unit regarding the suitability for patent application. 
Type Diagnostic Tool - Non-Imaging
Current Stage Of Development Initial development
Year Development Stage Completed 2013
Development Status Actively seeking support
Impact The potential impact of this biomarker is to improve the current method of detecting lymphoma in patients with primary Sjogren's syndrome 
 
Description A talk_British Sjogren's Syndrome Association Annual meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Give a presentation on fatigue in Sjogren's syndrome - its possible pathobiological basis and management
Year(s) Of Engagement Activity 2017
 
Description A talk_Fighting Fatigue (GSK) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact To give a presentation on the pathobiology of fatigue for employees within GSK
Year(s) Of Engagement Activity 2017
 
Description A talk_Sjogren's syndrome Symposium (Novartis, Basel campus) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact Give a presentation on the impact and possible pathobiological basis of fatigue in Sjogren's syndrome, and as a panel member for the symposium
Year(s) Of Engagement Activity 2018
 
Description Annual Conference of a patients' association 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Give a oral presentation regarding this cohort at the annual conference of the British Sjogren's syndrome Association - its aims and what it means to clinicians and patients. Afterwards, the PI also contribute a newsletter article.

We received many enquiries on how to take part in the project.
Year(s) Of Engagement Activity 2008
 
Description Annual Scandinavian Sjogren's Research Meeting (Krusenberg, Sweden) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Other audiences
Results and Impact Presentation at the annual meeting of the Scandinavian Sjogren's Syndrome Research Network. Krusenberg, Sweden. 1-2 Sept 2011. A 2-day workshop on Sjogren's research in Scandinavia (with approximately 50 participants with research interest in Sjogren's syndrome)

New collaborative research projects identified. Strengthening the collaboration that we have previously established with a research group in Sweden.
Year(s) Of Engagement Activity 2011
 
Description BSR Annual Conference (2015) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact I give a talk on the impact of the UK primary Sjogren's syndrome Registry on research into the condition
Year(s) Of Engagement Activity 2015
 
Description EULAR annual meeting (Rome, 2015) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact I give a plenary talk on the current research in primary Sjogren's syndrome at the conference
Year(s) Of Engagement Activity 2015
 
Description Internet 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact we have redesigned our website (www.sjogrensregistry.org) by introducing a "blog", "running headlines" and "News", we have markedly improved our internet presence: the number of visits to the site has risen from <10 a month to an average of >1000 visits per month at present, with a total of >11,000 visitors to our website.
Year(s) Of Engagement Activity 2009,2010,2011
 
Description Internet video interview (Berlin 2012) 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Health professionals
Results and Impact I was interviewed by the company Congress Media which produce Highlights of the European League Against Rheumatism 2012 for people who cannot attend the conference or delegates who cannot attend all the sessions to view the key papers presented at the conference

Increase the profile of the UKPSSR
Year(s) Of Engagement Activity 2012
 
Description Invited Talk_ Lausanne, Switzerland 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Keynote talk to Rheumatologists on clinical and research advances in Sjogren's syndrome
Year(s) Of Engagement Activity 2017
 
Description Invited talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Invited speaker at the European League Against Rheumatism Annual Conference, Amsterdam
Year(s) Of Engagement Activity 2018
 
Description Invited talk_Clinical Research and Education Meeting (Birmingham) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Give a talk on how patient cohorts can benefit translational research. Target audience: Specialty trainees and newly appointed consultants considering participating in clinical research
Year(s) Of Engagement Activity 2017
 
Description Lecture 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Teaching on Sjogren's syndrome in a 3-day Rheumatology update course held in Flavia, Sicily, Italy. Most of the delegates are practicing rheumatologists and general physicians from Italy.
Year(s) Of Engagement Activity 2018
 
Description Lecture (Glasgow 2012) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Health professionals
Results and Impact Update on the UKPSSR including research outputs at the annual conference of the British Society for Rheumatology (Glasgow, 1-3 May 2012).

Dissemination of the work and output of UKPSSR
Year(s) Of Engagement Activity 2012
 
Description Paper presentation (Berlin 2012) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact 3 poster presentations at the European League Against Rheumatism Annual Meeting, Berlin, 6-9 June, 2012)

Improve the profile of UKPSSR and new collaborative projects conceptualised.
Year(s) Of Engagement Activity 2012
 
Description Paper presentation - BSR (2010) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach National
Primary Audience Other audiences
Results and Impact Poster presentations at the British Society for Rheumatology Annual Meeting, Liverpool, 20-23 April, 2010

Improve the profile of the UKPSSR and project update for participants of the project
Year(s) Of Engagement Activity 2010
 
Description Paper presentation - BSR (2011) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Other audiences
Results and Impact Oral and poster presentations at the British Society for Rheumatology Annual Meeting, Brighton, 12-14 April, 2011

Improve he profile of the UKPSSR
Year(s) Of Engagement Activity 2011
 
Description Paper presentation - ISSS (Athens) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach International
Primary Audience Other audiences
Results and Impact Poster presentations at the 11th International Symposium on Sjogren's Syndrome, Athens, 28 Sept-1 Oct, 2012

Improve the profile of Sjogren's syndrome research and the UKPSSR, established new research collaboration.
Year(s) Of Engagement Activity 2011
 
Description Paper presentations (EULAR 2011) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach International
Primary Audience Other audiences
Results and Impact 2 poster presentations at the Annual Meeting of the European League Against Rheumatism, London, 25-28 May 2011.

Improve the profile of the UKPSSR and Sjogren's syndrome research
Year(s) Of Engagement Activity 2011
 
Description Proximity to Discovery themed week 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact This is a week of engagement activity targeting senior members of pharmaceutical/biotechnology industry to promote collaboration.
representatives from 5 pharmaceutical companies and a biotech company attended the meeting.
All companies showed great interest in our research into Sjogren's and fatigue.
Year(s) Of Engagement Activity 2016
 
Description Scientific Advisory Board 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact I have served on scientific advisory board for several pharmaceutical companies planning early phase clinical trials in Sjogren's syndrome and in fatigue.
Year(s) Of Engagement Activity 2014,2015,2016,2017
 
Description Talk (ACR 2014) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Oral presentation at ACR (SjS/SLE session)
Year(s) Of Engagement Activity 2014
 
Description Talk (BSR annual conference, 2014) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Health professionals
Results and Impact Improve the profile of fatigue research

New collaborative research being established
Year(s) Of Engagement Activity 2014
 
Description Talk (Brest 2009) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Presentation at the 10th International Symposium of Sjogren's syndrome (Brest, 1-3 Oct, 2009), on the establishment of the UK primary Sjogren's syndrome registry

Established several international research collaborations, thus promoting utility of the patient cohort and biobank.
Year(s) Of Engagement Activity 2009
 
Description Talk (CFS/ME collaborative, Bristol, 2014) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Raising interest in the area of my research

Dissemination of research idea and data
Year(s) Of Engagement Activity 2014
 
Description Talk (Industry) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Industry/Business
Results and Impact I was invited to give a lecture on Sjogren's syndrome to 30-40 researchers from a pharmaceutical company in Slough, followed by a discussion with leaders of relevant research groups on potential Sjogren's related research project.

Several potential research projects were discussed but did not progressed further at present largely due to perceived lack of market potential.
Year(s) Of Engagement Activity 2011
 
Description Talk (London 2012) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Presentation at the Franco-British Bilateral Symposium on strengthening translational research & clinical trials across the 2 countries. I was invited to speak on how to establish a large multi-centre patient cohort and biobank, especially on how to maintain high standards of the data and samples collected.

Raised the profile of the UKPSSR and Sjogren's research.
Year(s) Of Engagement Activity 2012
 
Description Talk (Newcastle 2012) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Presentation at the Annual Meeting of the British Sjogren's syndrome Association (Newcastle, 15 Sept 2012) on the immune system and theimmunological basis in Sjogren's syndrome

Engagement with patients with Sjogren's syndrome and their relatives/carers
Year(s) Of Engagement Activity 2012
 
Description Talk (Sjogren's Foundation, Boston) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Presentation of the UK Sjogren's syndrome registry
Year(s) Of Engagement Activity 2014
 
Description Talk - ME Research UK North East 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Invited speaker at the ME Research UK North East Annual meeting.

Engagement with patients with shared features of Sjogren's syndrome.
Year(s) Of Engagement Activity 2012
 
Description Translational research partnership with several pharmaceutical companies to develop/test novel therapeutic targets for primary Sjogren's syndrome 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Consultation agreements, collaborative research activities

Facilitate development of novel therapies for primary Sjogren's syndrome
Year(s) Of Engagement Activity 2012,2013,2014
 
Description collaboration with Cambridge Patient Led Research Hub to develop a secured patient online portal for symptom tracking 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact This is the start of a Patient led project to develop a secured online portal for patients with primary Sjogren's syndrome to track their own symptoms, but also have the capacity to support research and to linked to other research databases such as the UK primary Sjogren's syndrome registry
Year(s) Of Engagement Activity 2019
 
Description paper presentation (BSR 2012) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Other audiences
Results and Impact Oral and poster presentations of work from the UKPSSR at the British Society for Rheumatology Annual Conference, Glasgow, 1-3 May 2012

Improve profile of the UKPSSR and data dissemination to participants of the UKPSSR
Year(s) Of Engagement Activity 2012