MICA: NURTuRE - changing the landscape of renal medicine to foster a unified approach to stratified medicine
Lead Research Organisation:
University of Bristol
Department Name: Clinical Science at North Bristol
Abstract
Personalised medicine has the promise of changing the way we practice medicine, and rethinking the way new drugs are developed and trialled. Our objective is bold. We wish to reshape the landscape of kidney medicine in the UK, such that building disease specific cohorts, aligned with partnering of academics, clinicians, patients, charity and industry becomes an accelerated and routine conduit to achieve personalised management for all renal conditions.
We have made ground-breaking progress to now establish the infrastructure to achieve this goal, and now propose bringing together world leading academic expertise to productively understand the large amounts of data collected from these unique patient groups.
The exemplar outcome of this proposal is to re-classify one of the most difficult, albeit rare conditions suffered in renal medicine, idiopathic nephrotic syndrome (INS). A secondary outcome is to make use of the infrastructure and methodologies developed, to gain insight into one of the commonest kidney scenarios, chronic kidney disease (CKD), in order to make inroads into why some patients progress faster than others, a key unanswered problem.
Patients diagnosed with a rare disease are often vulnerable, inadequately cared for and poorly informed about their disease. This comes about largely because individual centres or clinicians see too few cases to gain the requisite experience for optimal management, and experience builds up too slowly. This is also a barrier to effective research, with too few patients available in one or a few centres to carry out adequately powered studies. The solution is well-managed and fully inclusive disease registries, developed on a sustainable basis. We have made a significant start to this vision, with the establishment of the UK renal rare disease registry, RADAR (www.rarerenal.org), and the development of the Steroid Resistant Nephrotic Syndrome disease group as a pilot group demonstrating the immense potential of this initiative. This project has now extended to include all patients with 'idiopathic' nephrotic syndrome (INS), at all ages.
A critical development underpinning the next stage of this vision is the establishment of NURTuRE, the National Unified Renal Translational Research Enterprise. The step change involves a UK infrastructure of dedicated renal study nurses, project managers, patient groups, charities and academics, resulting in the routine collection of high quality biosamples, and deep longitudinal clinical data, potentially for any renal disease cohort. Importantly, this is based on a new model of industry-academia partnership, with industry funding the bulk of the kick-off project, with a key stake in the two pilot cohorts, INS and Chronic Kidney Disease (CKD). Governance is provided by the largest UK kidney charity, Kidney Research UK.
This proposal aims to exploit the new power within these two cohorts, and in particular within INS, to stratify each patient according to detailed genetic and molecular screening of patient blood and DNA samples. This re-classification will be the first since the 1970s, and is based on ground-breaking advances in our biological understanding of Nephrotic Syndrome, based on study of the target cell of the disease in the kidney, called the podocyte. This will lead to targeted therapy towards the podocyte, to replace current non-specific toxic treatments, using new biological agents.
Furthermore, the proposal will generate large new datasets in CKD coupled with innovative analytic methodologies, to demonstrate how this approach has the potential to make hitherto challenging insights into disease mechanism in a multifactorial disease state.
The success of this enterprise would be the change in definition, investigation and management of INS, as well as a 'shop window' for future studies in any kidney condition, for both clinicians/academics and for industry partners, existing and future.
We have made ground-breaking progress to now establish the infrastructure to achieve this goal, and now propose bringing together world leading academic expertise to productively understand the large amounts of data collected from these unique patient groups.
The exemplar outcome of this proposal is to re-classify one of the most difficult, albeit rare conditions suffered in renal medicine, idiopathic nephrotic syndrome (INS). A secondary outcome is to make use of the infrastructure and methodologies developed, to gain insight into one of the commonest kidney scenarios, chronic kidney disease (CKD), in order to make inroads into why some patients progress faster than others, a key unanswered problem.
Patients diagnosed with a rare disease are often vulnerable, inadequately cared for and poorly informed about their disease. This comes about largely because individual centres or clinicians see too few cases to gain the requisite experience for optimal management, and experience builds up too slowly. This is also a barrier to effective research, with too few patients available in one or a few centres to carry out adequately powered studies. The solution is well-managed and fully inclusive disease registries, developed on a sustainable basis. We have made a significant start to this vision, with the establishment of the UK renal rare disease registry, RADAR (www.rarerenal.org), and the development of the Steroid Resistant Nephrotic Syndrome disease group as a pilot group demonstrating the immense potential of this initiative. This project has now extended to include all patients with 'idiopathic' nephrotic syndrome (INS), at all ages.
A critical development underpinning the next stage of this vision is the establishment of NURTuRE, the National Unified Renal Translational Research Enterprise. The step change involves a UK infrastructure of dedicated renal study nurses, project managers, patient groups, charities and academics, resulting in the routine collection of high quality biosamples, and deep longitudinal clinical data, potentially for any renal disease cohort. Importantly, this is based on a new model of industry-academia partnership, with industry funding the bulk of the kick-off project, with a key stake in the two pilot cohorts, INS and Chronic Kidney Disease (CKD). Governance is provided by the largest UK kidney charity, Kidney Research UK.
This proposal aims to exploit the new power within these two cohorts, and in particular within INS, to stratify each patient according to detailed genetic and molecular screening of patient blood and DNA samples. This re-classification will be the first since the 1970s, and is based on ground-breaking advances in our biological understanding of Nephrotic Syndrome, based on study of the target cell of the disease in the kidney, called the podocyte. This will lead to targeted therapy towards the podocyte, to replace current non-specific toxic treatments, using new biological agents.
Furthermore, the proposal will generate large new datasets in CKD coupled with innovative analytic methodologies, to demonstrate how this approach has the potential to make hitherto challenging insights into disease mechanism in a multifactorial disease state.
The success of this enterprise would be the change in definition, investigation and management of INS, as well as a 'shop window' for future studies in any kidney condition, for both clinicians/academics and for industry partners, existing and future.
Technical Summary
Renal disease is often complex and chronic with variable phases of activity, resulting in advances in therapies being slow and difficult to introduce systematically. We have realised a sustainable national infrastructure, NURTuRE (National Unified Renal Translational Research Enterprise, nurturebiobank.org), kick-start funded by an industry/academic consortium partnership (£2.05M) to systematically permit recruitment of any patient with kidney disease to participate in research lifelong. Crucially, this includes meticulous biosample collection from every patient, protocolled to stringent industry standards. NURTuRE establishes a national network of research nurses to recruit patients into two pilot cohorts of kidney disease (1) a rare disease, idiopathic nephrotic syndrome (INS) and (2) a common condition, chronic kidney disease (CKD), held within an established registry. We are recruiting 1000 INS and 3000 CKD patients over 2 years (2017-19). This proposal will assemble a unique dataset from those cohorts, combining analysed biomarkers with detailed temporal clinical and routine biochemical data. By the end of the funding period the aim is to achieve a paradigm shift in mechanism-based stratification for INS, and additionally establish proof of principle that this resource can yield rich datasets for discovery of stratification paradigms in CKD.
The platform is based on solid momentum over the last 7 years, of having established in the UK firstly a renal rare disease registry (RaDaR) based on substantial core infrastructure, under the governance of the UK Renal Association, with a Rare Disease Committee, and RaDaR operational management board. Additionally the IT is based within the established UK Renal Registry, and linked to Renal Patient View, both NHS embedded organisations.
The proposal aims to achieve the first re-classification of INS in decades, as well as advancing mechanism based endotypes of CKD which can be built upon in future studies
The platform is based on solid momentum over the last 7 years, of having established in the UK firstly a renal rare disease registry (RaDaR) based on substantial core infrastructure, under the governance of the UK Renal Association, with a Rare Disease Committee, and RaDaR operational management board. Additionally the IT is based within the established UK Renal Registry, and linked to Renal Patient View, both NHS embedded organisations.
The proposal aims to achieve the first re-classification of INS in decades, as well as advancing mechanism based endotypes of CKD which can be built upon in future studies
Planned Impact
Realising the objective of this programme of research will benefit the following groups:
1. Patients with kidney disease and cliinicians as this project will result in disease stratification based diagnostic and prognostic categories based on clinical/genetic/biomarker/'omic' profile, superseding current therapeutic response or observational categories. This work will also enable the design of interventional trials (working with existing and future industry partners) to introduce novel drugs/biologics to clinical practice. These are based on mechanistically derived stratification algorithms to determine inclusion criteria with the highest likelihood of success
2. Renal scientists. This project will result in a repository of highest quality samples and deep clinical/genotypic/biomarker/'omic' data for research and industry based cooperative strategies in INS and CKD. For renal scientists with interests in other disease areas the development of NURTuRE provides a complete UK platform for disease cohort building, stratification and interventional trials in nephrology
3. Industry - by forming partnerships with industrial/pharmaceutical companies we will develop new assays and drug/compound pipelines thus creating commercial opportunities for a worldwide market. This project will also establish and showcase a dynamic and adaptable infrastructure for clinical research with which to engage with industry and academic partners
The NURTuRE resource is already attracting the serious attention of several large Pharma companies for investment. At the present time, three companies are in negotiations with the Project Development Team, including the extension of current cohorts and development of new renal disease cohorts for future use.
4. Other scientists. This work will lead to the Development and application of 'machine learning' methodologies for integrating large datasets
This will have applications across disease spectra, in all specialities
5. The UK economy. Renal disease is expensive. Over 2% of NHS budget is spent on 0.1% of the population. Renal disease is expensive. Over 2% of NHS budget is spent on 0.1% of the population. The overall cost of treating CKD in England has been estimated at £1.4 billion/year and development of biomarkers to identify rates of progression would transform the ability to trial emerging therapies such as novel anti-fibrotics, and thereby introduce new agents into clinical care. Annual incidence of CKD attributed to INS is increasing (0.2% to 2.3%) The current protocol for INS management is indiscriminate high dose steroids. Of resistant patients, only 30% will respond to 2nd/3rd line immunosuppression, the rest suffer long-term morbidity and renal failure requiring dialysis/transplantation. Identification of 'non-responders' by recently introduced genetic panel screening has been estimated to save £68,900 per patient pre-dialysis (figure submitted in UKGTN approval) by avoidance of unnecessary investigations and treatment. Stratification proposed in the non-genetic cohort aims to transform response rates with new biologics/agents, and prevention of CKD.
6. Patient organisations and Charities- the embedding of specific charities and patient organisations such as Kidney Research UK and the nephrotic syndrome trust (NeST) within NURTuRE will better enable them to inform patients about research that will benefit their own disease.
Patients have been centrally involved in the design, and rollout of NURTuRE, and will continue to benefit from advising national research strategies, and on individual levels by having access to their own data and disease specific information (e.g. nurturebiobank.org, rarerenal.org)
7. The general public. The other non-academic beneficiaries will be the public: we are committed to public engagement on many levels, and the PIs have many years of experience between them of addressing lay groups including patients, carers and the general public.
1. Patients with kidney disease and cliinicians as this project will result in disease stratification based diagnostic and prognostic categories based on clinical/genetic/biomarker/'omic' profile, superseding current therapeutic response or observational categories. This work will also enable the design of interventional trials (working with existing and future industry partners) to introduce novel drugs/biologics to clinical practice. These are based on mechanistically derived stratification algorithms to determine inclusion criteria with the highest likelihood of success
2. Renal scientists. This project will result in a repository of highest quality samples and deep clinical/genotypic/biomarker/'omic' data for research and industry based cooperative strategies in INS and CKD. For renal scientists with interests in other disease areas the development of NURTuRE provides a complete UK platform for disease cohort building, stratification and interventional trials in nephrology
3. Industry - by forming partnerships with industrial/pharmaceutical companies we will develop new assays and drug/compound pipelines thus creating commercial opportunities for a worldwide market. This project will also establish and showcase a dynamic and adaptable infrastructure for clinical research with which to engage with industry and academic partners
The NURTuRE resource is already attracting the serious attention of several large Pharma companies for investment. At the present time, three companies are in negotiations with the Project Development Team, including the extension of current cohorts and development of new renal disease cohorts for future use.
4. Other scientists. This work will lead to the Development and application of 'machine learning' methodologies for integrating large datasets
This will have applications across disease spectra, in all specialities
5. The UK economy. Renal disease is expensive. Over 2% of NHS budget is spent on 0.1% of the population. Renal disease is expensive. Over 2% of NHS budget is spent on 0.1% of the population. The overall cost of treating CKD in England has been estimated at £1.4 billion/year and development of biomarkers to identify rates of progression would transform the ability to trial emerging therapies such as novel anti-fibrotics, and thereby introduce new agents into clinical care. Annual incidence of CKD attributed to INS is increasing (0.2% to 2.3%) The current protocol for INS management is indiscriminate high dose steroids. Of resistant patients, only 30% will respond to 2nd/3rd line immunosuppression, the rest suffer long-term morbidity and renal failure requiring dialysis/transplantation. Identification of 'non-responders' by recently introduced genetic panel screening has been estimated to save £68,900 per patient pre-dialysis (figure submitted in UKGTN approval) by avoidance of unnecessary investigations and treatment. Stratification proposed in the non-genetic cohort aims to transform response rates with new biologics/agents, and prevention of CKD.
6. Patient organisations and Charities- the embedding of specific charities and patient organisations such as Kidney Research UK and the nephrotic syndrome trust (NeST) within NURTuRE will better enable them to inform patients about research that will benefit their own disease.
Patients have been centrally involved in the design, and rollout of NURTuRE, and will continue to benefit from advising national research strategies, and on individual levels by having access to their own data and disease specific information (e.g. nurturebiobank.org, rarerenal.org)
7. The general public. The other non-academic beneficiaries will be the public: we are committed to public engagement on many levels, and the PIs have many years of experience between them of addressing lay groups including patients, carers and the general public.
Organisations
- University of Bristol (Lead Research Organisation)
- EVOTEC (Collaboration)
- Retrophin (Collaboration)
- Evotec Biosystems AG (Project Partner)
- EspeRare Foundation (Project Partner)
- Kidney Research UK (Project Partner)
- UCB Pharma (United Kingdom) (Project Partner)
- Randox (United Kingdom) (Project Partner)
- Renal Association (Project Partner)
Publications
Zhu B
(2019)
Disruption of MAGI2-RapGEF2-Rap1 signaling contributes to podocyte dysfunction in congenital nephrotic syndrome caused by mutations in MAGI2.
in Kidney international
Zheng J
(2022)
Trans-ethnic Mendelian-randomization study reveals causal relationships between cardiometabolic factors and chronic kidney disease.
in International journal of epidemiology
Weng P
(2021)
De novo TRIM8 variants impair its protein localization to nuclear bodies and cause developmental delay, epilepsy, and focal segmental glomerulosclerosis
in The American Journal of Human Genetics
Webb NJA
(2019)
Long term tapering versus standard prednisolone treatment for first episode of childhood nephrotic syndrome: phase III randomised controlled trial and economic evaluation.
in BMJ (Clinical research ed.)
Turro E
(2020)
Whole-genome sequencing of patients with rare diseases in a national health system.
in Nature
Tuffin J
(2021)
GlomSpheres as a 3D co-culture spheroid model of the kidney glomerulus for rapid drug-screening
in Communications Biology
Tuffin J
(2019)
A Composite Hydrogel Scaffold Permits Self-Organization and Matrix Deposition by Cocultured Human Glomerular Cells.
in Advanced healthcare materials
Description | PARASOL project |
Geographic Reach | Multiple continents/international |
Policy Influence Type | Participation in a guidance/advisory committee |
Description | Applying Machine Learning To Nephrotic Syndrome Datasets From UK And Internationally, For Discovery Of Mechanistic Drivers Of Disease |
Amount | £109,894 (GBP) |
Funding ID | Paed_RP_006_20211215 |
Organisation | Kidney Research UK |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 03/2023 |
End | 01/2025 |
Description | Developing an in vitro model of Glomerulosclerosis to facilitate drug target screening |
Amount | £93,520 (GBP) |
Funding ID | BB/L502364/1 |
Organisation | Biotechnology and Biological Sciences Research Council (BBSRC) |
Sector | Public |
Country | United Kingdom |
Start | 09/2013 |
End | 09/2017 |
Description | MICA: NURTuRE - changing the landscape of renal medicine to foster a unified approach to stratified medicine |
Amount | £2,589,391 (GBP) |
Funding ID | MR/R013942/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 06/2018 |
End | 07/2024 |
Description | National Registry for Rare Kidney Diseases (FSGS & MPGN). |
Amount | £35,000 (GBP) |
Funding ID | RP45/2008 |
Organisation | Kidney Research UK |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 08/2009 |
End | 12/2012 |
Description | National studies of kidney disease in childhood and adolescence |
Amount | £349,929 (GBP) |
Funding ID | G0800571 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 08/2009 |
End | 03/2011 |
Description | Personalised immunomonitoring in idiopathic nephrotic syndrome - towards a molecular re-classification of disease |
Amount | £99,925 (GBP) |
Funding ID | KKR/Paed2017/04 |
Organisation | Kidney Research UK |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 08/2017 |
End | 12/2019 |
Description | Signalling pathways to Proteinuria |
Amount | £517,412 (GBP) |
Funding ID | MR/L002418/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 11/2013 |
End | 08/2017 |
Description | Trans-national cohorts of nephrotic syndrome - a unified approach to a global chronic disease |
Amount | £532,743 (GBP) |
Funding ID | MR/P024297/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 03/2017 |
End | 03/2020 |
Title | GCRF - national NephroS study |
Description | International INS cohort, built by funding from MRC GCRF award |
Type Of Material | Biological samples |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | Industry engagement for use and partnerships Evolving plans for research outcomes |
Title | Glomsphere development |
Description | The glomerulus is the filtration unit of the kidney. Injury to any component of this specialised structure leads to impaired filtration and eventually fibrosis and chronic kidney disease. Current two and three dimensional (2D and 3D) models that attempt to recreate structure and interplay between glomerular cells are imperfect. Most 2D models are simplistic and unrepresentative, and 3D organoid approaches are currently difficult to reproduce at scale and do not fit well with current industrial drug-screening approaches. Here we report a rapidly generated and highly reproducible 3D co-culture spheroid model (GlomSpheres), better demonstrating the specialised physical and molecular structure of a glomerulus. Co-cultured using a magnetic spheroid formation approach, conditionally immortalised (CI) human podocytes and glomerular endothelial cells (GEnCs) deposited mature, organized isoforms of collagen IV and Laminin. We demonstrate a dramatic upregulation of key podocyte (podocin, nephrin and podocalyxin) and GEnC (pecam-1) markers. Electron microscopy revealed podocyte foot process interdigitation and endothelial vessel formation. Incubation with pro-fibrotic agents (TGF-ß1, Adriamycin) induced extracellular matrix (ECM) dysregulation and podocyte loss, which were attenuated by the anti-fibrotic agent Nintedanib. Incubation with plasma from patients with kidney disease induced acute podocyte loss and ECM dysregulation relative to patient matched remission plasma, and Nintedanib reduced podocyte loss. Finally, we developed a rapid imaging approach to demonstrate the model's usefulness in higher throughput pharmaceutical screening. GlomSpheres therefore represent a robust, scalable, replacement for 2D in vitro glomerular disease models. |
Type Of Material | Model of mechanisms or symptoms - human |
Year Produced | 2021 |
Provided To Others? | Yes |
Impact | Collaborative tool developed with UCB pharma Further development with funding and project plans Also licensed to Purespring Therapeutics |
Title | NURTuRE biobank |
Description | National cohorts of patients with CKD and INS Biosamples (blood, urine, DNA, biopsies) stored at UK biobank, Milton Keynes |
Type Of Material | Biological samples |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | Industry investment - £4M MRC Personalised medicine grant |
URL | http://nurturebiobank.org |
Title | Transcriptomic data on lymphocytes |
Description | single cell RNA sequencing data on the whole International NephroS cohort, performed by an industrial collaborator (Evotec), with an agreement for data sharing with the academic team |
Type Of Material | Biological samples |
Year Produced | 2024 |
Provided To Others? | Yes |
Impact | Data still being analysed |
Title | NURTuRE patient database |
Description | National cohorts of CKD and Nephrotic Syndrome. Patient clinical data is stored at the UK Renal Registry via the RaDaR patient registry |
Type Of Material | Database/Collection of data |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | Industry investment - £4M to date |
URL | http://nurturebiobank.org |
Description | Evotec |
Organisation | Evotec |
Country | Germany |
Sector | Private |
PI Contribution | Collection of patient disease blood samples from Nephrotic Syndrome patients in relapse and corresponding remission |
Collaborator Contribution | RNAseq analysis of all these samples with data shared with the academic team |
Impact | Not yet complete |
Start Year | 2018 |
Description | Evotec iPSC generation |
Organisation | Evotec |
Country | Germany |
Sector | Private |
PI Contribution | Provision of patient samples from UK registry from which to generate iPSC cells |
Collaborator Contribution | Generation of iPSC cells, to be shared with us once made |
Impact | Just started |
Start Year | 2021 |
Description | Retrophin natural history study in nephrotic syndrome |
Organisation | Retrophin |
Country | United States |
Sector | Private |
PI Contribution | Provision of data from our national nephrotic syndrome database |
Collaborator Contribution | Data analyst and high level project management |
Impact | No outcome yet |
Start Year | 2020 |
Title | THERAPY |
Description | The application provides gene therapies for treating monogenic forms of nephrotic syndrome. |
IP Reference | US2021402008 |
Protection | Patent application published |
Year Protection Granted | 2021 |
Licensed | Yes |
Impact | Licensed as part of University spinout of Purespring Therapeutics |
Title | Nephrotic Syndrome Patient App |
Description | App for patients to record their own data on a daily basis Partly funded by Wellcome Trust Patient award |
Type Of Technology | Webtool/Application |
Year Produced | 2020 |
Impact | Just being tested by patient focus groups - due for release March 14 2024 |
Title | TranSMART platform |
Description | tranSMART data management platform set up on virtual machine for the NURTuRE databases |
Type Of Technology | Webtool/Application |
Year Produced | 2021 |
Open Source License? | Yes |
Impact | Ability for all consortium partners to access and analyse different patient databases |
Description | NURTuRE launch event |
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 | Research nurse and clinician gathering for national patient cohort study |
Year(s) Of Engagement Activity | 2018,2019 |
URL | http://www.nurturebiobank.org |
Description | NURTuRE research consortium meeting day |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Patient involvement in consortium meeting for Precision Medicine project |
Year(s) Of Engagement Activity | 2020 |
Description | National NS patient day |
Form Of Engagement Activity | Participation in an open day or visit at my research institution |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | 40 people attended a national patient day, held in Bristol, with a series of talks, and in the afternoon guided visits around the research labs |
Year(s) Of Engagement Activity | 2023 |
Description | National Nephrotic Syndrome Patient Day |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Nephrotic Syndrome patient and parent day, talks, engagement with clinicians researchers and charities |
Year(s) Of Engagement Activity | 2017,2018,2019 |
Description | Roadshow to demonstrate Nephrotic Syndrome patient App |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Virtual event to present latest version of patient App and to gather patient and carer feedback |
Year(s) Of Engagement Activity | 2022 |
Description | Wellcome Trust funded NS patient App development |
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 | Patient and carer involvement in developing a patient focussed app, particularly designed to engage young adults and adolescents, to help in disease monitoring, management and patient education |
Year(s) Of Engagement Activity | 2020,2021 |
Description | • Patient Information Day held 31 July 2021, as part of the 13th International Podocyte Conference held in Manchester |
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 | • Patient Information Day held 31 July 2021, as part of the 13th International Podocyte Conference held in Manchester Virtual and onsite event . Talks from patients, clinicians and academics from across the world |
Year(s) Of Engagement Activity | 2021 |
URL | https://acrobat.adobe.com/link/track?uri=urn:aaid:scds:US:ea8e2df1-8de9-459d-be12-d89aeeaf84bb#pageN... |
Description | • World Kidney Day virtual event held 11 March 2021 |
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 | Virtual event with international speakers including clinicians and researchers |
Year(s) Of Engagement Activity | 2021 |