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.
Organisations
- Newcastle University, United Kingdom (Collaboration, Lead Research Organisation)
- University Hospitals Birmingham NHS Foundation Trust, Birmingham (Collaboration)
- University of Strasbourg, France (Collaboration)
- AbbVie Inc (Collaboration)
- University of Stavanger (Collaboration)
- Northumbria University, United Kingdom (Collaboration)
- Queen Mary, University of London, United Kingdom (Collaboration)
- Nascient ltd (Collaboration)
- The European League Against Rheumatism (EULAR) (Collaboration)
- University of Liverpool, United Kingdom (Collaboration)
- University of Paris South 11, France (Collaboration)
- Novartis (Collaboration)
- Resolve Therapeutics, LLC (Collaboration)
- University of Oxford, United Kingdom (Collaboration)
- Great Western Hospitals NHS Foundation Trust (Collaboration)
- Uppsala University (Collaboration)
- ElectroCore LLC (Collaboration)
- GlaxoSmithKline (GSK) (Collaboration)
- The Dudley Group NHS Foundation Trust (Collaboration)
- University of Leeds, United Kingdom (Collaboration)
- Erasmus University Medical Center, Netherlands (Collaboration)
- The Binding Site (Collaboration)
- MedImmune (Collaboration)
- Oklahoma Medical Research Foundation (OMRF) (Collaboration)
- Columbia University Medical Center (Collaboration)
Publications
Battersby AC
(2018)
Correction to: Raised Serum IL-8 Levels Are Associated with Excessive Fatigue in Female Carriers of X-Linked Chronic Granulomatous Disease in the UK.
in Journal of clinical immunology
Bezzina OM
(2017)
Subjective and Objective Measures of Dryness Symptoms in Primary Sjögren's Syndrome: Capturing the Discrepancy.
in Arthritis care & research
Bodewes ILA
(2018)
Systemic interferon type I and type II signatures in primary Sjögren's syndrome reveal differences in biological disease activity.
in Rheumatology (Oxford, England)
Bowman SJ
(2017)
Randomized Controlled Trial of Rituximab and Cost-Effectiveness Analysis in Treating Fatigue and Oral Dryness in Primary Sjögren's Syndrome.
in Arthritis & rheumatology (Hoboken, N.J.)
Bowman SJ
(2012)
Biologic therapies in primary Sjögren's syndrome.
in Current pharmaceutical biotechnology
Brito-Zerón P
(2016)
Early diagnosis of primary Sjögren's syndrome: EULAR-SS task force clinical recommendations.
in Expert review of clinical immunology
Brito-Zerón P
(2018)
How immunological profile drives clinical phenotype of primary Sjögren's syndrome at diagnosis: analysis of 10,500 patients (Sjögren Big Data Project).
in Clinical and experimental rheumatology
Brito-Zerón P
(2019)
Epidemiological profile and north-south gradient driving baseline systemic involvement of primary Sjögren's syndrome.
in Rheumatology (Oxford, England)
Carapito R
(2017)
A new MHC-linked susceptibility locus for primary Sjögren's syndrome: MICA.
in Human molecular genetics
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 | £160,000 (GBP) |
| Funding ID | 21183 |
| Organisation | Versus Arthritis |
| Start | 05/2016 |
| End | 11/2017 |
| Description | Arthritis Research UK project grant |
| Amount | £159,609 (GBP) |
| Funding ID | 21183 |
| Organisation | Versus Arthritis |
| Start | 05/2016 |
| End | 10/2017 |
| 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 | £225,000 (GBP) |
| Organisation | Versus Arthritis |
| Start | 07/2012 |
| End | 06/2015 |
| Description | Centre Grant |
| Amount | £150,000 (GBP) |
| Funding ID | 20018 |
| Organisation | Versus Arthritis |
| Start | 07/2015 |
| End | 06/2017 |
| 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 | £250,000 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 07/2015 |
| End | 12/2016 |
| 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 | 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 |