MAximizing Sle ThERapeutic PotentiaL by Application of Novel and Stratified approaches (MASTERPLANS)

Lead Research Organisation: University of Manchester
Department Name: School of Medical Sciences

Abstract

Systemic Lupus Erythematosus (SLE) is a chronic incurable disease caused by a person's immune system attacking organs and tissues such as the joints, skin, kidneys and brain. SLE affects one in 2000 individuals in the UK. Currently, treatment is selected based on a doctor's experience and on a 'trial and error' approach. Many agents take at least 6 months to show maximum improvement during which patients often require large steroid doses. It is recognised that long-term complications of lupus are associated with both ongoing 'grumbling' disease activity and chronic steroid use. Standard immunosuppressives such as mycophenolate mofetil (MMF) have had response rates of 50-60% in clinical trials and newer, more targeted' biological therapies such as rituximab, belimumab and epratuzumab also report response rates in trials of 40-60%. Clinical experience and a number of studies have however suggested that there are certain patients who respond very well to particular treatments. The goals of a stratified approach therefore would be to allow doctors to maximise major response rates whilst avoiding / minimising chronic steroid therapy and aligning therapy selection better with our understanding of the key disease process in an individual patient. Our consortium will identify and apply in the clinic, factors that predict excellent response to therapy to allow doctors to increase the early use of 'most effective' therapies. This 'stratified' approach will also improve the success of future trials of new treatments for lupus which to date has had a suboptimal record.
To do this we will combine expertise from clinical and laboratory-based investigators, and link these with researchers working in the pharmaceutical industry. Our focus will be to identify factors that predict which patients do extremely well on any particular lupus treatment. We will start by focusing on a small number of drugs. As we demonstrate that this approach works well, we will be able to expand this method to other lupus treatments which are currently in development. We plan to re-analyse data already available from a number of large studies ongoing in the UK and internationally as well as to re-analyse data from previous lupus clinical trials. From these studies we will look for key predictive factors; such factors may include the type of lupus, genetic markers that the patient inherited and results of blood tests . In order to examine this question in even more detail, we plan to set up two parallel studies; one in patients with skin rashes due to lupus and one in patients with kidney involvement. In both these studies we will take biopsies to examine the affected tissue and also take blood and urine samples on a regular basis. These samples will be used to look in detail at how cells, proteins and other molecules change over time after a patient has been treated with a particular therapy. Combining this detailed information with the information gained from the larger studies we aim to better predict excellent levels of response to treatment.
This information will be used to help develop devices and/or computer programmes for the clinic to help find the most appropriate and effective treatment choices for patients with lupus. We plan to test our results in a clinical trial to examine whether this approach actually has more benefit for patients. Running alongside this, we will study the economic costs of lupus to the health care system as well as the costs of lupus to the individual and society. We anticipate that treating the right patient with the right drug at the right time will help control lupus better in individual patients, improve their survival rates and reduce their needs for need for steroid treatment. We also anticipate that this approach will significantly improve the quality of life of patients with lupus whilst also providing financial saving for the healthcare and benefits system.

Technical Summary

Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease affecting approx. 16,000 people in the UK. It is highly heterogeneous: each patient presents with a unique fingerprint of organs involved, severity, and response to therapy. The clinical heterogeneity is paralleled by a range of underlying genotypic and immune function abnormalities. A number of new therapies, with different mechanisms of action, have been developed. Overall response rates are only 40-60% but subsets of patients respond very well to each drug. Current therapy is based on a 'trial and error' approach often involving glucocorticoid co-therapy. Delayed and poor control of inflammation results in organ damage, cardiovascular disease and glucocortocoid toxicity. We aim to fundamentally improve care for SLE patients by identifying key endotypes associated with remission and low disease activity (LDA) on particular therapies.
Our goal requires a co-ordinated and co-operative approach. Our consortium combines expertise from academia with pharmaceutical and small and medium enterprise (SMEs) partners to identify predictors of response to exemplar therapies. Clinical and genotypic predictors of response will be sought by analysis of existing data from large studies. Two parallel prospective studies assessing tissue, blood and urine from patients with skin or renal lupus will study immunophenotypic predictors of response. These discoveries will be used to develop near-patient devices and algorithms to select therapy in clinic. We will test the benefit and cost-effectiveness of this stratification approach in trials.
Using the right drug at the right time will improve control of inflammation for people with SLE. Long-term benefits will be improved survival, improved quality of life and reduced glucocorticoid requirements, whilst providing financial savings for health and social care. MASTERPLANS will be the international model of best practice in delivering stratified medicine to SLE patients.

Planned Impact

Immediate beneficiaries will be SLE patients who will be offered treatment that is targeted on the basis of disease mechanisms and biomarkers that predict high levels of clinical response to particular drug treatments. A limitation of current standard of care therapy is the dependence on chronic glocucortocoid use to control disease on a day-to-day basis. Deploying other therapies to maximise efficacy will contribute to reducing this burden for patients. This offers the likelihood of better disease control, fewer flares, improved quality of life and reduce long-term morbidity.
A predictive algorithm and biomarker-based approach to SLE therapy will significantly influence payers and healthcare policy makers. In the short term we will target the right treatment to the right patient for the treatments that we have studied. In the medium-long term this investigative model for evaluating and positioning drugs better will be an exemplar of best practice whereby other treatments can be evaluated within the treatment paradigm for SLE.
For the pharmaceutical industry our approach will be a key driver for a change in the way SLE trials are performed. Entry criteria for clinical trials are currently based on fulfilling classification criteria and a predetermined level of disease activity. This approach has resulted in a number of trials that have failed to achieve their primary end-point when randomising 'all-comers' without any regard to specific mechanisms. The approach we will take, using predictive biomarkers and algorithms, will shift the paradigm to a mechanism-based approach that will increase the statistical power of clinical trials and increase the likelihood of success in subsets of patients with SLE. Inclusion across the regulatory age groups including children and expertise within the consortium in supporting delivery of Paediatric Investigational Plans will be a key additional benefit for Industry.
The consortium will contribute to and build momentum around, stratified medicine in the UK. In particular it will build on the UK's recognised strengths in the area of immune-inflammatory diseases. A consortium focused on SLE will help to further build strength and capacity to complement that already underway in RA and other inflammatory diseases. It will also complement the work of the NIHR Translational Research Partnerships that seek to link UK academic researchers with industry to bring through novel therapeutics for condition such as lupus early in their development cycle. This synergy will be enhanced greatly by this award. The consortium also supports the aims and objectives of the MRC Clinical Pharmacology Training programmes which seeks to bring through a new generation of Clinical Pharmacologists. Stratified Medicine is a major theme of the TRP and the Clinical Pharmacology programmes and so by linking with such initiatives, our consortium will help increase the visibility of the UK research infrastructure focused on stratified medicine and inflammatory conditions of importance.
Globally, SLE is a disease with a major ethnic gradient being more common and severe in the developing world including people of Chinese, African and Hispanic ancestry. Whilst our consortium is based in the UK, we will have access to international cohorts through patients involved in industry-sponsored global clinical trial development programmes as well as the SLICC cohort. This will allow our studies and the models of analysis developed to have a global relevance. This will also mean we will have an impact in areas of the world where lupus is more common, prognosis is poor and where sequential use of therapies that may not work are unaffordable. A biomarker driven selective use of agents may however be cost-effective in such an environment and allow a wider population of patients to benefit from these new therapeutic developments.

Publications

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Beresford MW (2018) Paediatric rheumatology in 2017: Child-centred research is the key to progress. in Nature reviews. Rheumatology

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Gavan SP (2018) The economic case for precision medicine. in Expert review of precision medicine and drug development

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Geifman N (2018) Patient Stratification Using Longitudinal Data - Application of Latent Class Mixed Models. in Studies in health technology and informatics

 
Description Benlysta Steering Committee, London - May 2018
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Our UK register for Biologics enabled belimumab to be NICE approved. We now have quarterly steering group meetings with NICE and NHS England to assess progress of the policy
 
Description British Society for Rheumatology SLE Guidelines
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Future of Immunology, Houses of Parliament, London - October 2018. Meeting to promote immunology across Government, M/S, Charities and British Society of Immunology
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description Life Sciences Review, House of Lords, London - October 2018 Hosted by Randox Laboratories
Geographic Reach National 
Policy Influence Type Participation in a national consultation
 
Description Lupus Foundation of America/Federal Drugs Administration Meeting to discuss clinical trial designs and approaches for SLE
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact I attended this The LFA/FDA meeting that discussed the regulatory environment around trials fro SLE. It followed on from a White paper we co-authored that addressed these issues.
 
Description NICE / NHS England Managed Access Agreement: Belimumab for SLE
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Belimumab is the first drug licensed for SLE in 50 years. It has demonstrable efficacy in SLE patients. Access to it in England and Wales through this MAA will improve patient outcomes.
 
Description New NHSE policy for Rituximab in SLE - Literature Review and Policy Revision - July 2018
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact I contributed to this guideline review assessing the data to support the use of rituximab in SLE. I contributed to the Clinical Reference Group review working with NHS England to complete this process.
 
Description Versus Arthritis/NIHR/DHSC - Experimental Medicine Strategy for these partners
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact This meeting influenced the policy of Versus Arthritis and DHSC in the area of MSK Experimental Medicine research. As a result the NIHR TRC has been relaunched and Versus Arthritis are now more involved in the process. The NIHR BioResource will also be an important shared study for this group
 
Description British Isles Lupus Assessment Group Biologics Register
Amount £360,000 (GBP)
Organisation GlaxoSmithKline (GSK) 
Sector Private
Country Global
Start 03/2017 
End 02/2021
 
Description Lupus UK
Amount £175,000 (GBP)
Funding ID NK 
Organisation LUPUS UK 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2015 
End 08/2018
 
Description MRC Proximity to Discovery
Amount £8,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 02/2018 
End 02/2019
 
Description NIHR Common Disease BioResource
Amount £900,000 (GBP)
Organisation University of Cambridge 
Sector Academic/University
Country United Kingdom
Start 01/2019 
End 03/2022
 
Description NIHR Manchester Biomedical Research Centre
Amount £28,500,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 04/2017 
End 03/2022
 
Title BMS SLE Conceptual Model Steering Committee - 10/4/2018 
Description I am involved with BMS in developing an SLE Conceptual Model for assessing the health economics of SLE. Membership of this Steering Committee has allowed me to contribute to this work and new methodology. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2018 
Provided To Others? No  
Impact We have set up a initial model and are now applying for research support to develop and refine the modelling 
 
Title Lupus Foundation of America Disease Assessment Training (LFA POINT) 
Description We have licensed in the LFA POINT training system to train our SLE researchers across the UK to get training in disease assessment tools. This is the first time a non-commercial group has used this training tool and it will enhanced our ability to do SLE trials and studies in the UK 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2016 
Provided To Others? Yes  
Impact Will report uptake and outcomes later 
 
Title BILAG Biologics Register (BILAG BR) 
Description This is a national observational study of SLE patients starting on biological therapies. It recruits from 25 centres currently and has recruited 500 patients to date 
Type Of Material Database/Collection of data 
Year Produced 2013 
Provided To Others? Yes  
Impact This register supports the ongoing access to biologics for SLE in the UK as it collects prospective data and informs future policies in this area. It is also an example of the use of unlicensed medications and how to gather data whilst allowing ongoing access 
 
Description GSK-BEAT-LUPUS 
Organisation GlaxoSmithKline (GSK)
Country Global 
Sector Private 
PI Contribution We are collaborating with GSK to deliver an early phase clinical trial in lupus. The true cost of the trial is £2M and the contribution of GSK is critical to successful delivery of the trial. GSK have advised about protocol development.
Collaborator Contribution We are leading the clinical trial
Impact No outputs as yet
Start Year 2016
 
Description MASTERPLANS Consortium - Aeirtec Limited 
Organisation Aeirtec
Country United Kingdom 
Sector Private 
PI Contribution The University of Manchester is the lead organsation for the MASTERPLANS consortium
Collaborator Contribution For the purposes of the collaboration, The University of Manchester have access to the largest bank of annotated clinical samples in SLE in Europe and an established research activity in the disease. Additionally, through this consortium they will generate samples from intervention studies that would not otherwise be available. Aeirtec have proprietary technology that generates a uniquely ultra high level of customised multiplex immunoassay sensitivity. Many top of the hierarchy markers (eg low abundance early response cytokines) involved in inflammatory, immune and vascular disease exist at low abundance and require the level of sensitivity that Aeirtec's assay system provides to avoid the loss of sample marker data as 'below level of detection'. Aeirtec also have experience in distillation of marker panels for discrimination between disease strata and group response to treatment. The combined forces of large cohort sample banking and unparalleled custom multiplex assay sensitivity generates a unique platform for delineation of disease stratification and efficacy soluble protein marker panels in SLE.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Aurinia Pharmaceuticals Inc 
Organisation Aurinia Pharmaceuticals Inc
Country Canada 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution Aurinia/Vifor will provide patient level data from key pivotal trials conducted using MMF (ALMS Trial programme). Data will be prepared cleaned and shared with the consortium through a database manager working within Aurinia. The health related quality of life data generated from the active and placebo arms of these trials will also be used in the development of health economic modelling (WS6). The consortium is uniquely placed to combine data from a number of sources focused on response to MMF and a major component of this data is held by Vifor from the ALMS trial programme that demonstrate the efficacy of MMF in the long-term management of patients with SLE. This provides an invaluable dataset that can be added to other observational cohort data from patients trials.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Epistem Limited 
Organisation Epistem
Country United Kingdom 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution Epistem have expertise in providing gene expression and genotypic information to help provide predictive biomarkers for patient stratification and therapeutic decision-making. They have extensive experience in validating and developing RNA signature assays and DNA genotyping assays. Epistem's unique strength is the provision of assays to a CE-IVD marked Point-of-Care platform, Genedrive, to be utilised in a decentralised setting. Epistem will work with the consortium to take key biomarker findings to Point-of-Care systems. Epistem can uniquely contribute expertise in the delivery of this near patient testing system.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - GlaxoSmithKline 
Organisation GlaxoSmithKline (GSK)
Country Global 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution GSK - provision of anonymised patient level data and biomarker samples from key pivotal trials conducted using belimimab (anti-BLyss)(BLISS 52, n= 865 and BLISS 76, n=819). Data from the control arms of trials will be used to populate the MMF analysis across a number of clinical trial (CT) programs (WS5). The health related QOL data generated from active and placebo arms of these trials will be used in the development of health economic modelling (WS6).
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Imagen Biotech Limited 
Organisation Imagen Biotech
Country United Kingdom 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution Imagen Biotech will take compounds from the consortium (mycophenolic acid and monoclonal antibodies) and test using their adhesion assay in a high throughput manner using automated fluorescence microscopy (High Content Screening).
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Imperial College of Science, Technology and Medicine, London 
Organisation Imperial College London
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead partner for the MRC funded MASTERPLANS Consortium.
Collaborator Contribution The Imperial College of Science, Technology and Medicine will provide significant input to the Consortium including leading on the analysis of renal biopsy specimens and co-ordination of the renal substudy.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - King's College, London 
Organisation King's College London
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead partner for the MRC funded MASTERPLANS Consortium.
Collaborator Contribution King's College, London will provide significant input to the Consortium including leading in the genetic analysis of cohort data and also working with Manchester to lead and co-ordinate the large cohort data analysis.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Medical Research Council 
Organisation Medical Research Council (MRC)
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead partner for the MRC funded MASTERPLANS Consortium.
Collaborator Contribution The Medical Research Council will provide significant input to the Consortium including leading on statistical modelling of integrated datasets with an emphasis on multistate modelling of disease activity over time based on the BILAG2004 scoring system.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Medimmune Limited 
Organisation MedImmune
Country United States 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution MedImmune have a specific interest in SLE and have a strong pipeline of agents currently in development targeting this therapeutic area. Several of these trials are already in the field targeting the interferon pathway (Anti IFN -MED1545, anti IFNAR -MED1546). MedImmune have also developed a type I interferon gene signature which they are using within these clinical trials. MedImmune will bring this knowledge to the study of interferon dynamics during the prospective arms of the study using MMF and or B-cell targeted therapies. MedImmune also has expertise in proteomic and complex flow cytometry of lupus samples which will be used to complement WP1-4.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Myriad RBM 
Organisation Myriad RBM USA
Country United States 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution Myriad RBM has a long-standing and a well established expertise in inflammatory diseases. In particular they have expertise in providing multiplex assay systems to study a range of potentially important cytokines biomarkers that can be adapted to a bespoke disease specific panels that can track disease activity and may serve as predictive biomarkers for response / non-response. In addition they have a unique ex vivo system (TruCulture) to assess cytokine expression in whole blood in response to addition of a drug of interest. Such predictive data combined with clinical and other biomarker data will help develop predictive algorithms for selecting therapy for patients in a timely manner. It will also provide the data by which new testing platforms and algorithms can be brought to the clinic. Myriad RBM can uniquely contribute expertise in the development and delivery of these near patient testing system which is already part of a portfolio in advanced stages of clinical development and are already deployed for other purposes in other clinical settings already (Vectra DA for RA).
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - Pfizer Limited 
Organisation Pfizer Ltd
Country United Kingdom 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution Pfizer will support the consortium in developing clinical pharmacology modelling and support management of the overall consortium including statistical support.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - UCB Biopharma SPRL 
Organisation UCB Pharma
Country United Kingdom 
Sector Private 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium
Collaborator Contribution UCB will patient level data and baseline biomarker samples from epratuzumab (anti-CD22) trials including the Phase 2 and the Phase 3 EMBODY studies. Control arms will be used to populate MMF analyses. UCB will analyse blood samples using their in house CyTOF2 system (not widely available in the UK) to identify and test the optimal cell surface phenotypic markers and intracellular readouts in the patient study. WS6: Epratuzumab HRQOL data will also be used in the development of health economic modelling.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - University College London 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead partner for the MRC funded MASTERPLANS Consortium.
Collaborator Contribution The University College of London will provide significant input to the Consortium including leading on peripheral blood immunophenotyping and analysis of lymphocyte subsets during therapy.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - University of Bath 
Organisation University of Bath
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead partner for the MRC funded MASTERPLANS Consortium
Collaborator Contribution The University of Bath will provide significant input to the Consortium including co-ordination of the serological factors in our consortium studies
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - University of Cambridge 
Organisation University of Cambridge
Department Divisions of Nephrology and Clinical Pharmacology
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium.
Collaborator Contribution The University of Cambridge will take a significant leadership role in co-ordinating PPI and PPE activities in the consortium and also advising on study design, future trials and funding opportunities through leadership of the Longevity Committee
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - University of Leeds 
Organisation University of Leeds
Department Faculty of Medicine and Health
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead partner for the MRC funded MASTERPLANS Consortium.
Collaborator Contribution The University of Leeds will provide significant input to the Consortium including leading on the overall prospective study and specifically the cutaneous SLE study. They will analyse cutaneous biopsy data and also develop epidermal sampling analysis.
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium - University of Liverpool 
Organisation University of Liverpool
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead partner for the MRC funded MASTERPLANS Consortium.
Collaborator Contribution The University of Liverpool will provide significant input to the Consortium including leading on planning and assessment of young adults with SLE as well as studying urinary biomarkers in SLE and substudies examining neutrophil function
Impact N/A
Start Year 2015
 
Description MASTERPLANS Consortium -University of Birmingham 
Organisation University of Birmingham
Country United Kingdom 
Sector Academic/University 
PI Contribution The University of Manchester is the lead organisation for the MASTERPLANS Consortium
Collaborator Contribution The University of Birmingham will take a signifiacnt leadership role in metabolomics and PPI/E for the consortium
Impact N/A
Start Year 2015
 
Description NIHR BioResource 
Organisation University of Leeds
Department Leeds Institute of Rheumatic and Musculoskeletal Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution We led a collaborative Common Diseases BioResource for Immune Mediated Inflammatory Diseases
Collaborator Contribution MAnchester BRC will be the co-ordinating partner in the Common Disease BioResource for IMID
Impact N/A
Start Year 2019
 
Description NIHR Common Disease BioResource 
Organisation Newcastle University
Country United Kingdom 
Sector Academic/University 
PI Contribution We led a collaborative Common Diseases BioResource for Immune Mediated Inflammatory Diseases
Collaborator Contribution Manchester BRC will co-ordinate the Common Disease BioResource for Immune Mediated Inflammatory Diseases
Impact None as yet
Start Year 2019
 
Description "Nanostring 3D™ Biology and the Next Generation of Genomics" workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Local postgraduate, postdoctoral, PIs and other academics from within Imperial College London, and the surrounding areas, including other London based Universities were in attendance. The workshop focussed on the use of NanoString technology in clinical trials and to access retrospective cohorts for in depth analyses that was not previously possible using conventional methods. I presented on the topic of "Biomarkers of remission in Patients with Lupus Nephritis", engaging with the use of tissue samples available and the data that can be retrieved using these methods, with their relationship to the MASTERPLANS consortium project. There was much interest and engagement with the study itself, as well as the methods. Due to the interest the work received, I was invited to speak to a wider audience at a European summit, later in the year.
Year(s) Of Engagement Activity 2017
 
Description 12th International Congress on SLE (March 2017, Australia) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I presented work on damage and also on our stratified medicine programme at this World Lupus Congress
Year(s) Of Engagement Activity 2017
 
Description 13th International Congress on SLE (poster presentation, March 2018, Germany) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A presentation on danage and its assessment at the European Lupus Meeting (Dusseldorf- March 2018)
Year(s) Of Engagement Activity 2018
 
Description 7th annual Nanostring Summit 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Attendees ranged from postgraduate, postdoctoral, PIs, research technical staff and other academics to industry representatives and policy makers. The title of the talk was "Elucidating a Renal Transcriptomic signature for Lupus Nephritis" and the use of retrospective FFPE biopsy analysis in clinical trials and to access retrospective cohorts, in relation to the work on the MASTERPLANS consortium project. There was much interest and engagement with the PLANS study itself, as well as the data obtained so far using these methods. There was much interest and discussion on the work plan and data, with representatives from industry particularly interested in the end stages of the project and possible targets for pharmaceutical purposes. In addition, there was a lot of academic interest, with a number of people reaching out for more information since. One such researcher has travelled up from Oxford University to be trained in the methodology, to apply the techniques to another retrospective cohort analysis, using lymphoma samples.
Year(s) Of Engagement Activity 2017
URL https://www.nanostring.com/application/files/3015/0766/5563/London_Summit_2017_V1_Agenda.pdf
 
Description ? Presented at LUPUS EUROPE Annual Convention in Wurzburg, Germany 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact annual conference of European network. MASTERPLANS patient collaborator spoke about MASTERPLANS activity from a personal perspective.
Year(s) Of Engagement Activity 2016
URL http://www.lupus-europe.org/
 
Description ARC Amstel Voorjaars Symposium (April 2017, Amsterdam) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I spoke on damage assessment in SLE to this large national rheumatology study day
Year(s) Of Engagement Activity 2017
 
Description American College of Rheumatology 2018 Conference, Chicago, USA - October 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation of results of work for the BRC on stratified medicine and cross-CTD immune pathogenesis shared pathways.
Year(s) Of Engagement Activity 2018
 
Description BBC North-West News Interview 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact I was interviewed by BBC North-West Tonight about our lupus research especially our focus on personalised medicine and our MRC and BRC funded work.
Year(s) Of Engagement Activity 2017
 
Description BILAG-BR Investigators Day ( December 2017, Manchester) 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The investigator meeting trained colleagues into the study procedures for the BILAG BR study and discussed MASTERPLANS in this context
Year(s) Of Engagement Activity 2017
 
Description BRC Celebration Event (December 2016, Manchester) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This event brought together university and hospital staff from across the city to disucss the BRC future plans and vision
Year(s) Of Engagement Activity 2016
 
Description BRC Scientific Advisory Board Meeting (January 2018) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The BRC SAB was to reflect on the initial year of the BRc and discuss strategy and receive international expert input on our short term objectives and our medium term strategy
Year(s) Of Engagement Activity 2018
 
Description BSR Rare Disease Strategy 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Good round table discussion about improving clinical services for patients with rare rheumatic diseases including lupus and vasculitis and how stratified medicine initiatives ad SLE trials could be developed in this context

BSR to draft a report and policy position
Year(s) Of Engagement Activity 2015
 
Description Belimumab / NHS England Steering Committee Meeting (February 2018, London) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This is a quarterly steering group to monitor recruitment and data from the belimumab patients in the BILAG BR
Year(s) Of Engagement Activity 2018
 
Description British Society for Rheumatology ( April 2017, Birmingham) 
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 I presnetd an update on our stratified medicine studies and the BILAGBR
Year(s) Of Engagement Activity 2017
 
Description Chapel Allerton Hospital Leeds 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Consultants spoke about their clinic and Researchers presented details of their research Inc. MASTERPLANS. Jane Dunnage (MASTERPLANS PPI Chair) spoke about the importance of patients getting involved in research in general and explained a little about MASTERPLANS.
Year(s) Of Engagement Activity 2016
URL http://www.leedsth.nhs.uk/
 
Description Conservative Muslim Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact This meeting in the House of Lords gave me the opportunity to talk about arthritis and its burden in the community as well as new approaches to treatment and prevention
Year(s) Of Engagement Activity 2015
 
Description Department of Health Precision Medicine Conference Dec 2015 London UK 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact This all day event drew together a number of key players in Precision Medicine in the UK. It included round-table discussions and presentations that promoted our consortium as well as allowing our patient partners to discuss the role of patients in developing such research and how patients can get fully involved in such consortia
Year(s) Of Engagement Activity 2015
 
Description European Lupus Congress Sept 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This talk focused on Damage in SLE and how we can better prevent this and improve long-term outcomes in this condition
Year(s) Of Engagement Activity 2016
 
Description How Precision Medicine will Transform Healthcare ( March 2018, Manchester) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact This meeting was part of our BRC seminar series and discussed precision medicine and presented exemplars of current studies
Year(s) Of Engagement Activity 2017,2018
 
Description Immune mediated Inflammatory Diseases Workshop: Wellcome Trust 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This 2 day workshop brought together a wide spectrum of experts across immune mediated diseases to discuss challenges and future opportunities to learn more about immune mediated conditions. Several potential collaborations were discussed
Year(s) Of Engagement Activity 2017
 
Description Inflammation Meeting at Wolfson College, Oxford - December 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Meeting to discuss and present current update on inflammation pathways in SLE linking current knowledge to stratified medicine and novel trial designs.
Year(s) Of Engagement Activity 2018
 
Description International Psoriasis Council Symposium, Munich September 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I spoke on P4 medicine in rheumatology and how such an approach can better address patient stratification
Year(s) Of Engagement Activity 2016
 
Description Kellgren @ 10 Manchester (December 2017, Manchester) 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact This event was to update our patients and study participants on our research and progress with recent studies
Year(s) Of Engagement Activity 2017
 
Description LUPUS News and Views magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Article to update Lupus UK members about MASTERPLANS (with J Dunnage)
Some members of LUPUS UK volunteered to be MASTERPLANS patient collaborators
Year(s) Of Engagement Activity 2016
 
Description LUPUS UK Council meeting 
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 25 attendees but they represent the national membership. Council members will circulate information in their local group newsletter/website which should reach 2000
Awareness raising about MASTERPLANS
Some members of the LUPUS UK Council volunteered to be MASTERPLANS patient collaborators
Year(s) Of Engagement Activity 2016
 
Description LUPUS UK Council meeting - 2 meetings in 2017, 1 in early 2018 
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 LUPUS UK has a Council on which representatives from various areas of the UK attend. Most of these people have lupus and run activities to offer support for patients and family/carers. Council meets twice a year to consider many aspects of lupus activities, and its members have close links with their local hospitals as well as patients. This is a good way of updating a larger audience (several thousand) across the UK and offers a good opportunity to give insight into treatment and research which patients may benefit from.
Year(s) Of Engagement Activity 2017,2018
 
Description LUPUS UK Council meetings 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact Details of how patients will be involved in MASTERPLANS Consortium both as collaborators and participants. Funding requested for add-on research. Subsequently how activity is progressing.
Year(s) Of Engagement Activity 2014,2015,2016,2017
URL http://www.lupusuk.org.uk/
 
Description LUPUS UK Trustees meetings 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact Awareness raising about MASTERPLANS; discussion on how LUPUS UK can contribute to the project. Some members of the LUPUS UK trustees volunteered to be MASTERPLANS patient collaborators
Year(s) Of Engagement Activity 2014,2015,2016,2017
URL http://www.lupusuk.org.uk/
 
Description LUPUS UK Trustees meetings, 3 times in 2017, once in early 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact The Trustees of LUPUS UK are responsible for the activities of the charity and keen to support better understanding of the condition, its treatments and supporting people who live with the condition. The Trustees aware grants for specialist nurses within the NHS and also grant-funds research into lupus. They have awarded a grant towards some Health Economics work which is being carried out in conjunction with MASTERPLANS.
Year(s) Of Engagement Activity 2017,2018
 
Description Launch of the Medicines Discovery Catapult (January 2017, Alderley Park) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Industry/Business
Results and Impact The Catapult is an important partner for our BRC and this launch event introduced us to new collaborators and potential funding streams
Year(s) Of Engagement Activity 2018
 
Description Lupus Academy Conference, Rio de Janeiro - September 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Teaching and presenting new research in SLE classification and taxonomy. I contributed to a debate about new criteria in SLE and also taught on haematological complications.
Year(s) Of Engagement Activity 2018
 
Description Lupus News and Views magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Magazine contains information on living with lupus, activities national and local, research, fund raising possibilities. Important for lupus patients to see what research is being carried out, esp. as LUPUS UK will be grant-funding for some of MASTERPLANS activity
Year(s) Of Engagement Activity 2015,2016,2017
URL http://www.lupusuk.org.uk/
 
Description Lupus Think Tank 
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 This is an international Think Tank that is hosted by UCB and several key opinion leaders to try and better understand SLE outcomes and SLE clinical trial shortcomings and opportunities for improving trial design
Year(s) Of Engagement Activity 2016,2017
 
Description Lupus UK Northern Ireland Open Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact This talk updated patients and practitioners on new treatment for SLE and stratified medicine approaches to therapy
Year(s) Of Engagement Activity 2015
 
Description Lupus at Leeds 2017 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact A patient - public information activity with 6 researchers in my group presenting
Year(s) Of Engagement Activity 2017
 
Description MASTERPLANS - Manchester Patient Meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact This 4 hour meeting sought to update local patients who expressed an interest in collaborating with the Consortium. We were able to invite patients to help out further with the Consortium following this meeting
Year(s) Of Engagement Activity 2015
 
Description MRC Immunopsychiatry Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact An MRC hosted workshop in immune aspects of psychiatry and psychiatric disorders in chronic autoimmune diseases
Year(s) Of Engagement Activity 2016
 
Description MRC Stratified Medicine Consortia in Immune-Inflammatory Diseases Workshop 
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 This workshop explored common characteristics across a number of key consortia and has helped to better understand common challenges in the mechanisms of these conditions as well as common methodological challenges
Year(s) Of Engagement Activity 2016
 
Description MRC Stratified Medicine meeting (April 2017, London) 
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 A steering group meeting to discuss progress of our MRC Consortium
Year(s) Of Engagement Activity 2017
 
Description Manchester Medical Society 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Teaching on new developments in rheumatology based on our ongoing research in the BRC and our MRC-funded studies
Year(s) Of Engagement Activity 2018
 
Description Manchester Medical Society 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Teaching about new developments in Rheumatology.
Year(s) Of Engagement Activity 2018
 
Description Meeting in Manchester with Versus Arthritis, 22nd February 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This meeting was between the 3 Northern BRCs and Versus Arthritis to discuss better integration of research strategy especially around the BRC, BioResource and HIC.
Year(s) Of Engagement Activity 2019
 
Description NHSA Meeting ( September 2017, Newcastle) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact NHSA meeting to plan collaborative work across the Northern BRCs
Year(s) Of Engagement Activity 2017
 
Description NIHR Manchester BRC and CRF Newsletter (June 2017) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Supporters
Results and Impact Our BRC newsletter is read widely by our circulation list and helps publicise our work amongst key stakeholders
Year(s) Of Engagement Activity 2017
 
Description NIHR Northern Biomedical Research Centre`s Showcase (March 2018, Manchester) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Industry/Business
Results and Impact We presented the work of the Northern BRCs to industry in an event supported by the NHSA
Year(s) Of Engagement Activity 2018
 
Description NIHR at 10 Portcullis House London 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact This event at Parliament allowed me to engage with MPs and lords as well as colleagues to promote the work of the Manchester BRU and our work with the NIHR on MSK research
Year(s) Of Engagement Activity 2016
 
Description NOVARTIS Biomedical Research Foundation (June 2017, Mayfair) 
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 A meeting between NIHR and Novartis to discuss potential engagement of Novartis in the UK
Year(s) Of Engagement Activity 2017
 
Description Patient Collaborators workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Patient Collaborators met to plan further activities for MASTERPLANS and update themselves on progress so far. It also provides an opportunity for them to get to know each other better and understand skills and opportunities they have, as well as meet key staff members,
Year(s) Of Engagement Activity 2017
 
Description Precision medicine forum 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Industry/Business
Results and Impact The conference programme included a patient panel: Panel members briefly introduced their project (in my case, MASTERPLANS), then took questions from floor.
Also Involved with round table discussion looking at data use which occurred immediately prior to panel and received good feedback from both.
Year(s) Of Engagement Activity 2016
URL http://precisionmedicineforum.com/
 
Description Presentation at Hammersmith Hospital Rheumatology Department's Patient Open Day 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact This hospital is one of MASTERPLANS contributing members, they wanted to alert their patients to opportunities to get involved in participating in research. Some questions and discussions after the meeting.
Year(s) Of Engagement Activity 2015
URL https://www.imperial.nhs.uk/our-locations/hammersmith-hospital
 
Description Presentation at Precision Medicine UK: Collaboration Nation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Awareness raising about MASTERPLANS particularly the patient collaboration 'model'
Good interaction with other panel members and facilitator, plus some contact with audience members at the end of the meeting
Year(s) Of Engagement Activity 2015
 
Description Royal National Hospital for Rheumatic diseases, Bath 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Jane Batchelor, MASTERPLANS patient collaborator, spoke about the importance of patients being willing to enrol as participants in research and gave information on MASTERPLANS. Bath is one of recruiting hospitals for MASTERPLANS, patients were advised to contact lupus consultant for more information.
Year(s) Of Engagement Activity 2017
URL http://www.rnhrd.nhs.uk/
 
Description SLE Stratified Medicine Application workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact The wrokshop was to prepare for a grant application workshop and we had patient collaborators in our group who helped us to shape our thinking

We improved our grant interview preparation and understood better what was important to patients in what we were trying to do.
Year(s) Of Engagement Activity 2014
 
Description SLE presentation to Red Ex Pharmaceuticals 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Industry/Business
Results and Impact I gave a presentation to this NW-based SME to discuss stratified medicine and chronic damage in SLE patients
Year(s) Of Engagement Activity 2018
 
Description SLICC Meeting (May 2017, South Korea) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The SLICC group plans and develops international SLE studies
Year(s) Of Engagement Activity 2017
 
Description Session co-chair at Juvenile SLE Study Group 10th Anniversary conference 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Session on MASTERPLANS held during seminar. Juvenile lupus patients will be involved as participants. Discussion on use of data, use of samples and involving the young people in some of the planning activities
Year(s) Of Engagement Activity 2016
URL https://www.liverpool.ac.uk/translational-medicine/research/ukjsle/jsle/
 
Description Site Visit Arthritis UK (October 2017) 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact PREVeNT RA poster was for a poster presentation at the site visit from the funding body Arthritis Research UK which took place in October 2017 our MASTERPLANS studies were also highlighted as part of our precision medicine workplans
Year(s) Of Engagement Activity 2017
 
Description Talk at the BBC Breakfast Show (September 2017) 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact I spoke on BBC Breakfast about SLE following Selena Gomez's renal transplant. This provided huge publicity for SLE and widened awareness
Year(s) Of Engagement Activity 2017
 
Description Translational Research Collaboration Steering Group Meeting (February 2018) 
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 The quarterly TRC meetings help us to develop a strategy for the TRC and industry links including new SLE and RA studies/trials
Year(s) Of Engagement Activity 2018
 
Description UK JSLE Conference Liverpool Jan 2016 
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 This meeting allowed patients to discuss participation in consortium activities and studies in particular how young adults could be involved as patient collaborators as well as participating in prospective studies
Year(s) Of Engagement Activity 2016
 
Description University of Keele INSPIRE Student Research Day December 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact I spoke at this event and discussed stratified medicine in SLE and what were learning about the current state of the art and how we can move this forward
Year(s) Of Engagement Activity 2016
 
Description VIII Eular Scientifically endorsed courses on systemic lupus erythematosus ( May 2017, Italy) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I teach about SLE outcome measures in this European course
Year(s) Of Engagement Activity 2017
 
Description Visit to China to key universities (January 2018, China) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Our university visited 4 Chinese universities. We planned and discussed future collaborations including student exchanges, collaborative grants and future visits
Year(s) Of Engagement Activity 2018
 
Description Visit to Peking University Medical Centre - June 2018 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Visit to Peking University Medical Centre. Discussed lupus clinical management and damage prevention. Discussed future collaborations on stratified medicine and improving treatment in SLE
Year(s) Of Engagement Activity 2018
 
Description World Healthcare Conference - 5th March 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation of work from NIHR BRC particularly around SLE and stratified medicine, followed by a panel discussion on stratified medicine.
Year(s) Of Engagement Activity 2019
 
Description World Precision Medicine Congress 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact International conference, a Patient Panel was convened and Jane Dunnage from MASTERPLANS was one. Each patient introduced their respective activity, then questions were asked of the panel. Great interest in involving patients and models of collaboration. Requested to take part in further patient panels.
Year(s) Of Engagement Activity 2016
URL http://www.terrapinn.com/conference/precision-medicine-congress-usa/index.stm
 
Description hospital open day 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact 'Drop in' for lupus patients, linked to clinic. Offers opportunities for patients to learn more about their condition, its treatment and what the future holds for them, by talking with professionals and other patients. Interest in research opportunities.
Year(s) Of Engagement Activity 2017,2018
 
Description magazine article - 3 issues in 2017 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact This is the main charity for lupus patients, reaching most lupus patients in UK and their family/carers. The magazine is read thoroughly by most members as it raises awareness of activities and informs of progress on research into lupus, which MASTERPLANS is a major part of. Patients cannot self-refer to the study, but are very interested to know about any steps forward in treatment and research.
Year(s) Of Engagement Activity 2017