The UK Inflammatory Bowel Disease Bioresource: Progressing from Genetics to Function and Clinical Translation in Crohn's Disease & Ulcerative Colitis
Lead Research Organisation:
University of Cambridge
Department Name: Medicine
Abstract
We are proposing to develop a centralised national recallable bioresource of 25,000 patients with Crohn's disease or ulcerative colitis (collectively inflammatory bowel disease) to support globally competitive scientific and clinical IBD research.
The IBD Bioresource would have the following key features:
1. DNA and serum + clinical and genetic data from 25,000 IBD patients recruited UK-wide - all stored in a central NIHR funded biorepository with technical input from UK Biobank
2. 1000 newly diagnosed IBD patients. Detailed samples unconfounded by treatment or surgery, plus follow-up samples (including stool) + clinical data
3. The first recallable IBD bioresource - allowing patients stratified by clinical subtype or carriage of specific IBD genetic risk variants to be recruited for stratified 'stage 2' scientific studies or clinical trials (each stage 2 study would require separate funding and new consent for each subject).
IBD affects 4 per 1000 Europeans, with peak onset in young adults. Despite steroids, immunosuppression and antibody therapies ~50% of patients require major surgery +/- colostomy for treatment failure or disease complications. Direct UK healthcare costs exceed £1billion/yr. Given major adverse impacts on health, education, relationships and jobs there is a pressing need to understand the causes of IBD and develop better treatments.
Since 2007 our group (the UK IBD Genetics Consortium) has, through national cohort building, international collaboration and use of leading technologies, made huge progress in understanding the genetic basis of IBD. In identifying >160 distinct genetic risk factors we have found evidence both of genetic strata within IBD and also of overlap between IBD and many other autoimmune diseases. The next steps, to fully capitalise on recent genetic advances, require functional analysis of the associated variants, to understand how they disturb cell function to cause IBD; and translation of this knowledge for clinical benefit. These key steps sit at the heart of stratified medicine - and both critically depend on access to a large Bioresource of patients of known or ascertainable genotype such as we are proposing, to obtain fresh samples for analysis or to recruit patients to stratified clinical trials.
'Recall-ability' is a key novel feature - transforming our existing 'passive' collection of 14,000 DNA samples into a new interactive resource of 25,000 patients fully engaged and recallable for stratified studies led by any UK investigator from medicine, science or industry. The inception cohort will allow study of biomarkers, microbial triggers and epigenetics unconfounded by drug effects. Further, many non-IBD investigators, for example from psoriasis, arthritis and colon cancer, have expressed support and interest in using the Bioresource where genetic risk variants are shared with their 'own' disease and / or therapies overlap with IBD - to interrogate shared mechanisms of disease and drug non-response.
Here we are requesting a 5 year partnership grant in which the MRC supports 4 key IBD Bioresource personnel, sharing costs related to patient recruitment and sample gathering with the (NIHR funded) Clinical Research Network (CRN) whose involvement would be mandated by the MRC funding; while Cambridge Biomedical Research Centre (BRC) have agreed if this application is successful to fund all costs related to centralised sample processing, quality control and storage, together with IT support plus one IBD data manager.
Given its scale and ambition we believe this proposal represents excellent value for money. The IBD Bioresource would provide a key platform for the scientific and clinical exploitation of recent dramatic advances in IBD genetics, would foster cross-disease collaboration and substantially facilitate interaction with industry. In so-doing it would underpin globally competitive IBD and inflammation research in the UK for the next 10 years.
The IBD Bioresource would have the following key features:
1. DNA and serum + clinical and genetic data from 25,000 IBD patients recruited UK-wide - all stored in a central NIHR funded biorepository with technical input from UK Biobank
2. 1000 newly diagnosed IBD patients. Detailed samples unconfounded by treatment or surgery, plus follow-up samples (including stool) + clinical data
3. The first recallable IBD bioresource - allowing patients stratified by clinical subtype or carriage of specific IBD genetic risk variants to be recruited for stratified 'stage 2' scientific studies or clinical trials (each stage 2 study would require separate funding and new consent for each subject).
IBD affects 4 per 1000 Europeans, with peak onset in young adults. Despite steroids, immunosuppression and antibody therapies ~50% of patients require major surgery +/- colostomy for treatment failure or disease complications. Direct UK healthcare costs exceed £1billion/yr. Given major adverse impacts on health, education, relationships and jobs there is a pressing need to understand the causes of IBD and develop better treatments.
Since 2007 our group (the UK IBD Genetics Consortium) has, through national cohort building, international collaboration and use of leading technologies, made huge progress in understanding the genetic basis of IBD. In identifying >160 distinct genetic risk factors we have found evidence both of genetic strata within IBD and also of overlap between IBD and many other autoimmune diseases. The next steps, to fully capitalise on recent genetic advances, require functional analysis of the associated variants, to understand how they disturb cell function to cause IBD; and translation of this knowledge for clinical benefit. These key steps sit at the heart of stratified medicine - and both critically depend on access to a large Bioresource of patients of known or ascertainable genotype such as we are proposing, to obtain fresh samples for analysis or to recruit patients to stratified clinical trials.
'Recall-ability' is a key novel feature - transforming our existing 'passive' collection of 14,000 DNA samples into a new interactive resource of 25,000 patients fully engaged and recallable for stratified studies led by any UK investigator from medicine, science or industry. The inception cohort will allow study of biomarkers, microbial triggers and epigenetics unconfounded by drug effects. Further, many non-IBD investigators, for example from psoriasis, arthritis and colon cancer, have expressed support and interest in using the Bioresource where genetic risk variants are shared with their 'own' disease and / or therapies overlap with IBD - to interrogate shared mechanisms of disease and drug non-response.
Here we are requesting a 5 year partnership grant in which the MRC supports 4 key IBD Bioresource personnel, sharing costs related to patient recruitment and sample gathering with the (NIHR funded) Clinical Research Network (CRN) whose involvement would be mandated by the MRC funding; while Cambridge Biomedical Research Centre (BRC) have agreed if this application is successful to fund all costs related to centralised sample processing, quality control and storage, together with IT support plus one IBD data manager.
Given its scale and ambition we believe this proposal represents excellent value for money. The IBD Bioresource would provide a key platform for the scientific and clinical exploitation of recent dramatic advances in IBD genetics, would foster cross-disease collaboration and substantially facilitate interaction with industry. In so-doing it would underpin globally competitive IBD and inflammation research in the UK for the next 10 years.
Technical Summary
Our main objective is to establish a centralised national Inflammatory Bowel Disease (IBD) Bioresource of 25,000 patients, from which subjects meeting inclusion criteria for approved downstream functional and clinical studies can be identified and recalled.
Subjects would be recruited from our existing network of UK IBD Genetics Consortium (UKIBDGC) collaborating hospitals. The study coordinators will train CRN (clinical research network) nurses in each site to organise recruitment, consent, sample and data collection. Such CRN nurses are paid by the NIHR: their contribution to this study would be mandated if it is funded by the MRC.
All IBD samples and data will be submitted to the NIHR BRC-MRC BioRepository team at Addenbrooke's, Cambridge. They have substantial expertise in high-throughput biological sample management, using LIMS tracking with automated storage and retrieval. Processing of all IBD samples will be undertaken by BioRepository personnel using established SOP's. DNA and serum will be extracted and quality checked using automated systems and deposited in fully monitored low temperature storage.
Dr Tim Peakman, Executive Director of UK Biobank, will provide strategic guidance on biobanking issues. Once UK Biobank BioRepository South is complete the intention is to move the IBD Bioresource to this new facility.
An IBD Bioresource management committee co-chaired by PI Parkes will, with the study coordinators, oversee recruitment and liaison with clinical centres. Proposals to use the IBD Bioresource will be reviewed by the NIHR BioResource scientific advisory board, including UKIBDGC representatives. Recall of patients for approved projects will be handled through the existing Cambridge NIHR BioResource mechanism.
Data generated on IBD Bioresource subjects (existing genotyping and sequencing data generated from our UKIBDGC studies) will be held on the central NIHR BioResource database and accessible to collaborating researchers.
Subjects would be recruited from our existing network of UK IBD Genetics Consortium (UKIBDGC) collaborating hospitals. The study coordinators will train CRN (clinical research network) nurses in each site to organise recruitment, consent, sample and data collection. Such CRN nurses are paid by the NIHR: their contribution to this study would be mandated if it is funded by the MRC.
All IBD samples and data will be submitted to the NIHR BRC-MRC BioRepository team at Addenbrooke's, Cambridge. They have substantial expertise in high-throughput biological sample management, using LIMS tracking with automated storage and retrieval. Processing of all IBD samples will be undertaken by BioRepository personnel using established SOP's. DNA and serum will be extracted and quality checked using automated systems and deposited in fully monitored low temperature storage.
Dr Tim Peakman, Executive Director of UK Biobank, will provide strategic guidance on biobanking issues. Once UK Biobank BioRepository South is complete the intention is to move the IBD Bioresource to this new facility.
An IBD Bioresource management committee co-chaired by PI Parkes will, with the study coordinators, oversee recruitment and liaison with clinical centres. Proposals to use the IBD Bioresource will be reviewed by the NIHR BioResource scientific advisory board, including UKIBDGC representatives. Recall of patients for approved projects will be handled through the existing Cambridge NIHR BioResource mechanism.
Data generated on IBD Bioresource subjects (existing genotyping and sequencing data generated from our UKIBDGC studies) will be held on the central NIHR BioResource database and accessible to collaborating researchers.
Planned Impact
A national inflammatory bowel disease (IBD) Bioresource that capitalises on recent genetics advances and on existing UK-wide recruitment pipelines would be transformative for UK IBD research. For the first time it would bring together large, motivated and precisely characterised IBD patient cohorts with UK investigators from medicine, science or industry. By providing a platform for downstream studies, it would directly aid translation of new genetics knowledge to improved IBD treatment - as well as fostering collaborations across several disease areas and facilitating interactions with industry.
Beneficiaries
1. Patients with IBD, by galvanising research, improving treatments and driving towards a cure - so improving their confidence in and enthusiasm for research, and ultimately their health, wellbeing and economic productivity.
2. Individuals at risk of IBD, helped by biomarkers of risk prediction and the development of preventative strategies
3. Academics in IBD investigating
a.pharmacogenetics + low-frequency/rare genetic variants
b.epigenetics
c.biomarkers of prognosis
d.functional / immunological impact of risk variants
e.microbial triggers of IBD flares
4. Funding agencies (NIHR, MRC, WT) - who can access an engaged patient population to ascertain their research priorities
5. Academics outside IBD - from diseases where genetics, mechanistic pathways and therapies are shared with IBD. The cross-cutting utility is a key feature: investigators from rheumatoid arthritis, multiple sclerosis, ankylosing spondylitis, psoriasis, TB and colorectal cancer have already expressed their wish to use the IBD Bioresource.
6. Industry - both existing (MSD, Novartis and GSK) and new partners from biotech and pharmaceutical industries. Collaborations would encompass all stages from drug development to clinical trials / stratified and experimental medicine.
7. The NIHR Bioresource programme: as Dr Bradley indicates in his Project Partner letter - 'The high level vision of the NIHR BioResource is to promote recruitment of well genotyped and phenotyped patients .. in collaboration with the Clinical Research Network, and an initial focus is immunological and inflammatory disease'
8. Crohn's and Colitis UK - the patients' charity who keenly support this proposal for the sense of purpose, progress and optimism it will bring to the 150,000+ UK sufferers of IBD who would have the opportunity to participate in research wherever they live in the UK.
9. Developers of IBD health policy who will benefit from advances in biomarkers and methods of IBD stratification to improve targeting of high cost therapies.
Inherent in the proposal is direct patient engagement in research - for the first time joining together a large IBD patient cohort with investigators. 25,000 patients with IBD (representing ~15% of the UK total) would be informed of research studies for which their clinical or genetic profiles matched inclusion criteria, and where appropriate would be encouraged to participate.
Patient involvement will include a mechanism to survey views for example regarding IBD research priorities and relevant health policy such as NICE guidance - so allowing patients to directly influence these.
Such patient interaction is strongly supported by the NIHR and by the national patient support group charity Crohn's and Colitis UK.
Patients and users will be engaged through a variety of media including a website, social networking, lectures and lay / academic publications. Success will be gauged by numbers of patients recruited and outputs in terms of projects, grants and papers resulting; collaborations established; and new therapies tested through the IBD Bioresource.
Of note, there are no other recallable IBD Bioresources elsewhere. This emphasises the opportunity to provide a unique platform to support globally competitive IBD research over the next 10 years.
Beneficiaries
1. Patients with IBD, by galvanising research, improving treatments and driving towards a cure - so improving their confidence in and enthusiasm for research, and ultimately their health, wellbeing and economic productivity.
2. Individuals at risk of IBD, helped by biomarkers of risk prediction and the development of preventative strategies
3. Academics in IBD investigating
a.pharmacogenetics + low-frequency/rare genetic variants
b.epigenetics
c.biomarkers of prognosis
d.functional / immunological impact of risk variants
e.microbial triggers of IBD flares
4. Funding agencies (NIHR, MRC, WT) - who can access an engaged patient population to ascertain their research priorities
5. Academics outside IBD - from diseases where genetics, mechanistic pathways and therapies are shared with IBD. The cross-cutting utility is a key feature: investigators from rheumatoid arthritis, multiple sclerosis, ankylosing spondylitis, psoriasis, TB and colorectal cancer have already expressed their wish to use the IBD Bioresource.
6. Industry - both existing (MSD, Novartis and GSK) and new partners from biotech and pharmaceutical industries. Collaborations would encompass all stages from drug development to clinical trials / stratified and experimental medicine.
7. The NIHR Bioresource programme: as Dr Bradley indicates in his Project Partner letter - 'The high level vision of the NIHR BioResource is to promote recruitment of well genotyped and phenotyped patients .. in collaboration with the Clinical Research Network, and an initial focus is immunological and inflammatory disease'
8. Crohn's and Colitis UK - the patients' charity who keenly support this proposal for the sense of purpose, progress and optimism it will bring to the 150,000+ UK sufferers of IBD who would have the opportunity to participate in research wherever they live in the UK.
9. Developers of IBD health policy who will benefit from advances in biomarkers and methods of IBD stratification to improve targeting of high cost therapies.
Inherent in the proposal is direct patient engagement in research - for the first time joining together a large IBD patient cohort with investigators. 25,000 patients with IBD (representing ~15% of the UK total) would be informed of research studies for which their clinical or genetic profiles matched inclusion criteria, and where appropriate would be encouraged to participate.
Patient involvement will include a mechanism to survey views for example regarding IBD research priorities and relevant health policy such as NICE guidance - so allowing patients to directly influence these.
Such patient interaction is strongly supported by the NIHR and by the national patient support group charity Crohn's and Colitis UK.
Patients and users will be engaged through a variety of media including a website, social networking, lectures and lay / academic publications. Success will be gauged by numbers of patients recruited and outputs in terms of projects, grants and papers resulting; collaborations established; and new therapies tested through the IBD Bioresource.
Of note, there are no other recallable IBD Bioresources elsewhere. This emphasises the opportunity to provide a unique platform to support globally competitive IBD research over the next 10 years.
Organisations
- University of Cambridge (Lead Research Organisation)
- Newcastle University (Collaboration)
- Microsoft Research (Collaboration)
- National Institute for Health Research (Collaboration)
- The Wellcome Trust Sanger Institute (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Royal Devon and Exeter Hospital (Collaboration)
- NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- HEALTH DATA RESEARCH UK (Collaboration)
- CAMBRIDGE UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Privitar (Collaboration)
- Crohn's and Colitis UK (Collaboration)
- NIHR Cambridge Biomedical Research Ctr (Project Partner)
Publications
Goldberg R
(2021)
A Crohn's Disease-associated IL2RA Enhancer Variant Determines the Balance of T Cell Immunity by Regulating Responsiveness to IL-2 Signalling.
in Journal of Crohn's & colitis
Kapizioni C
(2023)
Biologic therapy for inflammatory bowel disease: Real-world comparative effectiveness and impact of drug sequencing in 13,222 patients within the UK IBD BioResource.
in Journal of Crohn's & colitis
Alexander JL
(2022)
COVID-19 vaccine-induced antibody and T-cell responses in immunosuppressed patients with inflammatory bowel disease after the third vaccine dose (VIP): a multicentre, prospective, case-control study.
in The lancet. Gastroenterology & hepatology
Alexander JL
(2022)
COVID-19 vaccine-induced antibody responses in immunosuppressed patients with inflammatory bowel disease (VIP): a multicentre, prospective, case-control study.
in The lancet. Gastroenterology & hepatology
Weersma RK
(2019)
Diverticular disease: picking pockets and population biobanks.
in Gut
Luo Y
(2017)
Exploring the genetic architecture of inflammatory bowel disease by whole-genome sequencing identifies association at ADCY7.
in Nature genetics
Huang H
(2017)
Fine-mapping inflammatory bowel disease loci to single-variant resolution.
in Nature
Lee JC
(2017)
Genome-wide association study identifies distinct genetic contributions to prognosis and susceptibility in Crohn's disease.
in Nature genetics
De Lange KM
(2017)
Genome-wide association study implicates immune activation of multiple integrin genes in inflammatory bowel disease.
in Nature genetics
Kammermeier J
(2023)
Genomic diagnosis and care co-ordination for monogenic inflammatory bowel disease in children and adults: consensus guideline on behalf of the British Society of Gastroenterology and British Society of Paediatric Gastroenterology, Hepatology and Nutrition.
in The lancet. Gastroenterology & hepatology
Sazonovs A
(2020)
HLA-DQA1*05 Carriage Associated With Development of Anti-Drug Antibodies to Infliximab and Adalimumab in Patients With Crohn's Disease.
in Gastroenterology
Sazonovs A
(2022)
Large-scale sequencing identifies multiple genes and rare variants associated with Crohn's disease susceptibility.
in Nature genetics
Corridoni D
(2019)
NOD2 and TLR2 Signal via TBK1 and PI31 to Direct Cross-Presentation and CD8 T Cell Responses.
in Frontiers in immunology
Balarajah S
(2024)
OP07 Consistent IBD treatment approaches across South Asian and White ethnicities despite phenotypic variations: a study of 33,157 patients using the IBD BioResource
in Journal of Crohn's and Colitis
Fachal L
(2024)
OP08 Multi-ancestry genome-wide association study of inflammatory bowel disease identifies 125 novel loci and directly implicates new genes in disease susceptibility
in Journal of Crohn's and Colitis
Roberts C
(2024)
OP11 Exploring the potential clinical utility of NUDT15 pharmacogenetic testing in clinical practice: a 'focused reverse phenotyping' study in the UK IBD Bioresource
in Journal of Crohn's and Colitis
Noor N
(2020)
Personalised medicine in Crohn's disease
in The Lancet Gastroenterology & Hepatology
Kennedy NA
(2019)
Predictors of anti-TNF treatment failure in anti-TNF-naive patients with active luminal Crohn's disease: a prospective, multicentre, cohort study.
in The lancet. Gastroenterology & hepatology
Kennedy NA
(2019)
Predictors of anti-TNF treatment failure in anti-TNF-naive patients with active luminal Crohn's disease: a prospective, multicentre, cohort study.
in The lancet. Gastroenterology & hepatology
Serra EG
(2020)
Somatic mosaicism and common genetic variation contribute to the risk of very-early-onset inflammatory bowel disease.
in Nature communications
Nelson A
(2021)
The Impact of NOD2 Genetic Variants on the Gut Mycobiota in Crohn's Disease Patients in Remission and in Individuals Without Gastrointestinal Inflammation.
in Journal of Crohn's & colitis
Kennedy NA
(2018)
The Impact of NOD2 Variants on Fecal Microbiota in Crohn's Disease and Controls Without Gastrointestinal Disease.
in Inflammatory bowel diseases
Pele L
(2020)
The Inflammatory Bowel Disease (IBD) BioResource: an open-access platform of over 25,000 patients to accelerate research in Crohn's and Colitis
in Proceedings of the Nutrition Society
Title | Gut Reaction animation |
Description | This animation describes what Gut Reaction is about, how patient can take part in this programme through IBD BioResource and what taking part really means. |
Type Of Art | Film/Video/Animation |
Year Produced | 2021 |
Impact | N/A |
URL | https://bit.ly/2ZSaxTb |
Title | Gut Reaction logo |
Description | Logo |
Type Of Art | Artwork |
Year Produced | 2019 |
Impact | This started as a sixth from student competition organised by Angela Reynolds and where students taking parts were asked to design a logo that best described the Gut and Inflammatory Bowel disease. The winner was awarded £50 and the designed logo used to represent upcoming IBD study research. This logo has since been updated and now forms the basis of the HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction Logo. |
Description | IBD BioResource: an open-access platform of patients to accelerate research in Crohn's and Colitis |
Amount | £55,865 (GBP) |
Organisation | Gilead Sciences, Inc. |
Sector | Private |
Country | United States |
Start | 05/2020 |
End | 05/2021 |
Description | Pump priming agreement for Updating and analysing clinical data on 33,000 IBD BioResource participants to enable improved targeting of current treatments and development of new therapies in IBD |
Amount | £100,000 (GBP) |
Organisation | AstraZeneca |
Sector | Private |
Country | United Kingdom |
Start | 08/2023 |
Description | The UK IBD BioResource: Translating today's science into tomorrow's treatments in Crohn's disease |
Amount | $3,133,761 (USD) |
Organisation | The Leona M. and Harry B. Helmsley Charitable Trust |
Sector | Charity/Non Profit |
Country | United States |
Start | 11/2020 |
End | 10/2025 |
Description | The UK IBD BioResource: a platform to support UK IBD research |
Amount | £150,000 (GBP) |
Organisation | Crohn's and Colitis UK |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 08/2020 |
End | 08/2025 |
Description | UK IBD BioResource, a platform designed to expedite research into Crohn's disease and Ulcerative Colitis that will contribute to the development of new and better therapies. |
Amount | $200,000 (USD) |
Organisation | F. Hoffmann-La Roche AG |
Sector | Private |
Country | Global |
Start |
Description | Use of the UK IBD BioResource to identify genetic and clinical factors which influence response to tofacitinib; and development of a predictive model / biomarker of treatment response |
Amount | $200,000 (USD) |
Organisation | Pfizer Inc |
Sector | Private |
Country | United States |
Start | 01/2020 |
End | 03/2022 |
Title | Contribution to the Healthy Data Research Innovation Gateway |
Description | The Health Data Research Innovation Gateway (the 'Gateway') provides a common entry point to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the UK Health Data Research Alliance, such as a description, size of the population, and the legal basis for access.The Innovation Gateway does not hold or store any datasets or patient or health data but rather acts as a portal to allow discovery of datasets and to request access to them for health research. |
Type Of Material | Database/Collection of data |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | Stage 2 research applications and data access applications from the research community and Industry to access the IBD BioResource and Gut reaction panel. |
URL | https://web.www.healthdatagateway.org/search?search=IBD&tab=Datasets |
Title | IBD Bioresource database |
Description | We have built a new database using Redcap to capture clinical phenotype data on IBD patients nationwide. The server is hosted on the NHS N3 network at Cambridge University Hospital |
Type Of Material | Database/Collection of data |
Year Produced | 2016 |
Provided To Others? | Yes |
Impact | This database will support our IBD genetic and pharmacogenetic work |
Description | Clinical partners |
Organisation | Imperial College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Updated March 2018 - The above and 80+ other hospital around the UK are currently being set up to recruit to the UK IBD BioResource. At the time of reporting we have 59 hospital sites open and recruiting, with another 24 due to open in the next 6 months. We currently have ~9,500 patients within the IBD BioResource. Update February 2021 - We now have ~34,000 participants recruited across >100 participating hospitals. Update March 2022 - We now have ~36,000 participants but had to close down 10 sites giving a total of 95 participating sites. Update February 2023 - >38,000 adult and >50 paediatric participants; ~100 sites recruiting to the adult cohort and 3 to the paediatric cohort |
Collaborator Contribution | Recruiting patients with Crohn's disease and ulcerative colitis |
Impact | Recruitment of such an extensive IBD cohort (including samples and data) has enabled to change the IBD research landscape. Since 2016, ~ 70 UK research applications requesting access to the IBD BioResource panel have been received some of which have led to publications. |
Start Year | 2016 |
Description | Clinical partners |
Organisation | Newcastle upon Tyne Hospitals NHS Foundation Trust |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Updated March 2018 - The above and 80+ other hospital around the UK are currently being set up to recruit to the UK IBD BioResource. At the time of reporting we have 59 hospital sites open and recruiting, with another 24 due to open in the next 6 months. We currently have ~9,500 patients within the IBD BioResource. Update February 2021 - We now have ~34,000 participants recruited across >100 participating hospitals. Update March 2022 - We now have ~36,000 participants but had to close down 10 sites giving a total of 95 participating sites. Update February 2023 - >38,000 adult and >50 paediatric participants; ~100 sites recruiting to the adult cohort and 3 to the paediatric cohort |
Collaborator Contribution | Recruiting patients with Crohn's disease and ulcerative colitis |
Impact | Recruitment of such an extensive IBD cohort (including samples and data) has enabled to change the IBD research landscape. Since 2016, ~ 70 UK research applications requesting access to the IBD BioResource panel have been received some of which have led to publications. |
Start Year | 2016 |
Description | Clinical partners |
Organisation | Royal Devon and Exeter Hospital |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | Updated March 2018 - The above and 80+ other hospital around the UK are currently being set up to recruit to the UK IBD BioResource. At the time of reporting we have 59 hospital sites open and recruiting, with another 24 due to open in the next 6 months. We currently have ~9,500 patients within the IBD BioResource. Update February 2021 - We now have ~34,000 participants recruited across >100 participating hospitals. Update March 2022 - We now have ~36,000 participants but had to close down 10 sites giving a total of 95 participating sites. Update February 2023 - >38,000 adult and >50 paediatric participants; ~100 sites recruiting to the adult cohort and 3 to the paediatric cohort |
Collaborator Contribution | Recruiting patients with Crohn's disease and ulcerative colitis |
Impact | Recruitment of such an extensive IBD cohort (including samples and data) has enabled to change the IBD research landscape. Since 2016, ~ 70 UK research applications requesting access to the IBD BioResource panel have been received some of which have led to publications. |
Start Year | 2016 |
Description | Clinical partners |
Organisation | University of Edinburgh |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Updated March 2018 - The above and 80+ other hospital around the UK are currently being set up to recruit to the UK IBD BioResource. At the time of reporting we have 59 hospital sites open and recruiting, with another 24 due to open in the next 6 months. We currently have ~9,500 patients within the IBD BioResource. Update February 2021 - We now have ~34,000 participants recruited across >100 participating hospitals. Update March 2022 - We now have ~36,000 participants but had to close down 10 sites giving a total of 95 participating sites. Update February 2023 - >38,000 adult and >50 paediatric participants; ~100 sites recruiting to the adult cohort and 3 to the paediatric cohort |
Collaborator Contribution | Recruiting patients with Crohn's disease and ulcerative colitis |
Impact | Recruitment of such an extensive IBD cohort (including samples and data) has enabled to change the IBD research landscape. Since 2016, ~ 70 UK research applications requesting access to the IBD BioResource panel have been received some of which have led to publications. |
Start Year | 2016 |
Description | Clinical partners |
Organisation | University of Oxford |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Updated March 2018 - The above and 80+ other hospital around the UK are currently being set up to recruit to the UK IBD BioResource. At the time of reporting we have 59 hospital sites open and recruiting, with another 24 due to open in the next 6 months. We currently have ~9,500 patients within the IBD BioResource. Update February 2021 - We now have ~34,000 participants recruited across >100 participating hospitals. Update March 2022 - We now have ~36,000 participants but had to close down 10 sites giving a total of 95 participating sites. Update February 2023 - >38,000 adult and >50 paediatric participants; ~100 sites recruiting to the adult cohort and 3 to the paediatric cohort |
Collaborator Contribution | Recruiting patients with Crohn's disease and ulcerative colitis |
Impact | Recruitment of such an extensive IBD cohort (including samples and data) has enabled to change the IBD research landscape. Since 2016, ~ 70 UK research applications requesting access to the IBD BioResource panel have been received some of which have led to publications. |
Start Year | 2016 |
Description | Funding Partners |
Organisation | Crohn's and Colitis UK |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | I have raised partnership funding from multiple different sources to support the IBD Bioresource |
Collaborator Contribution | They are providing financial support for employing staff and support with sample processing and patient recall (through the NIHR Bioresource) |
Impact | The IBD Bioresource was launched in Jan 2016. There have been no research outputs yet - but many potential users have been in touch |
Start Year | 2015 |
Description | Funding Partners |
Organisation | National Institute for Health Research |
Department | NIHR Cambridge Biomedical Research Centre |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | I have raised partnership funding from multiple different sources to support the IBD Bioresource |
Collaborator Contribution | They are providing financial support for employing staff and support with sample processing and patient recall (through the NIHR Bioresource) |
Impact | The IBD Bioresource was launched in Jan 2016. There have been no research outputs yet - but many potential users have been in touch |
Start Year | 2015 |
Description | Funding Partners |
Organisation | The Wellcome Trust Sanger Institute |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | I have raised partnership funding from multiple different sources to support the IBD Bioresource |
Collaborator Contribution | They are providing financial support for employing staff and support with sample processing and patient recall (through the NIHR Bioresource) |
Impact | The IBD Bioresource was launched in Jan 2016. There have been no research outputs yet - but many potential users have been in touch |
Start Year | 2015 |
Description | Genomics partners |
Organisation | The Wellcome Trust Sanger Institute |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | We will supply DNA on 25000 patients with IBD |
Collaborator Contribution | They will undertake whole genome sequencing on 25000 patients with IBD, and undertake the analysis |
Impact | There have been multiple publications over many years from this long established collaboration • David Ellinghaus, Luke Jostins, Sarah L Spain, Adrian Cortes. Tom H Karlsen, Jeffrey C Barrett, Miles Parkes, Matthew A Brown, Andre Franke. Analysis of five chronic inflammatory diseases identifies 27 new associations and highlights disease-specific patterns at shared loci. Nat Genet. 2016 In press • Liu JZ, van Sommeren S, Huang H, Ng SC, Alberts R, Takahashi A, Ripke S, Lee JC, Jostins L, Shah T, Abedian S, Cheon JH, Cho J, Daryani NE, Franke L, Fuyuno Y, Hart A, Juyal RC, Juyal G, Kim WH, Morris AP, Poustchi H, Newman WG, Midha V, Orchard TR, Vahedi H, Sood A, Sung JJ, Malekzadeh R, Westra HJ, Yamazaki K, Yang SK; International Multiple Sclerosis Genetics Consortium; International IBD Genetics Consortium, Barrett JC, Franke A, Alizadeh BZ, Parkes M, B K T, Daly MJ, Kubo M, Anderson CA, Weersma RK. Association analyses identify 38 susceptibility loci for inflammatory bowel disease and highlight shared genetic risk across populations. Nat Genet. 2015 Sep;47(9):979-86. • Prescott NJ, Lehne B, Stone K, Lee JC, Taylor K, Knight J, Papouli E, Mirza MM, Simpson MA, Spain SL, Lu G, Fraternali F, Bumpstead SJ, Gray E, Amar A, Bye H, Green P, Chung-Faye G, Hayee B, Pollok R, Satsangi J, Parkes M, Barrett JC, Mansfield JC, Sanderson J, Lewis CM, Weale ME, Schlitt T, Mathew CG; UK IBD Genetics Consortium. Pooled sequencing of 531 genes in inflammatory bowel disease identifies an associated rare variant in BTNL2 and implicates other immune related genes. PLoS Genet. 2015 Feb 11;11(2):e1004955 • Heap GA, Weedon MN, Bewshea CM, Singh A, Chen M, Satchwell JB, Vivian JP, So K, Dubois PC, Andrews JM, Annese V, Bampton P, Barnardo M, Bell S, Cole A, Connor SJ, Creed T, Cummings FR, D'Amato M, Daneshmend TK, Fedorak RN, Florin TH, Gaya DR, Greig E, Halfvarson J, Hart A, Irving PM, Jones G, Karban A, Lawrance IC, Lee JC, Lees C, Lev-Tzion R, Lindsay JO, Mansfield J, Mawdsley J, Mazhar Z, Parkes M, Parnell K, Orchard TR, Radford-Smith G, Russell RK, Reffitt D, Satsangi J, Silverberg MS, Sturniolo GC, Tremelling M, Tsianos EV, van Heel DA, Walsh A, Watermeyer G, Weersma RK, Zeissig S, Rossjohn J, Holden AL; International Serious Adverse Events Consortium; IBD Pharmacogenetics Study Group, Ahmad T. HLA-DQA1-HLA-DRB1 variants confer susceptibility to pancreatitis induced by thiopurine immunosuppressants. Nat Genet. 2014 Oct;46(10):1131-4 • Parkes M, Cortes A, van Heel D, Brown M. Analysis Article: Genetic insights into common pathways and complex relationships among immune mediated diseases. Nature Reviews Genetics 2013. Sep;14(9):661-73 • Ellinghaus D, Zhang H, Zeissig S, Lipinski S, Till A, .., Annese V, Halfvarson J, D'Amato M, Daly MJ, Nothnagel M, Karlsen TH, Subramani S, Rosenstiel P, Schreiber S, Parkes M*, Franke A*. Association Between Variants of PRDM1 and NDP52 and Crohn's Disease, Based on Exome Sequencing and Functional Studies. Gastroenterology. 2013 Apr 25. [Epub ahead of print] • Wellcome Trust Case Control Consortium. Bayesian refinement of association signals for 14 loci in 3 common diseases. Nat Genet. 2012 Dec;44(12):1294-301. • Jostins L*, Ripke S* .. Daly MJ, Franke A, Parkes M, Vermeire S, Barrett JC, Cho JH. Host-microbe interactions shape genetic risk for inflammatory bowel disease. Nature, 2012 Nov 491(7422):119-24. • Franke A, McGovern DP Hakonarson H, Daly MJ, Parkes M. Genome-Wide Meta-Analysis Increases to 71 the Number of Confirmed Crohn's Disease Susceptibility Loci. Nature Genetics. 2010;42(12):1118-25. • Anderson CA, Daly MJ, Barrett JC, Parkes M, Annese V, Hakonarson H, Radford-Smith G, Duerr RH, Vermeire S, Weersma RK, Rioux JD. Meta-analysis identifies 29 additional ulcerative colitis risk loci, increasing the number of confirmed associations to 47. Nat Genet. 2011 Mar;43(3):246-52. • Wellcome Trust Case Control Consortium. Craddock N, Hurles ME, , Parkes M, Rahman N, Todd JA, Samani NJ, Donnelly P. Genome-wide association study of CNVs in 16,000 cases of eight common diseases and 3,000 shared controls. Nature. 2010 Apr 1;464(7289):713-20. • The UK IBD Genetics Consortium and WTCCC2 Genome-wide association study of ulcerative colitis identifies three susceptibility loci, including HNF4A. Nature Genetics 2009 Dec;41(12):1330-4. • Anderson CA Mathew CG, Satsangi J, Parkes M. Investigation of Crohn's disease risk loci in Ulcerative Colitis further defines their molecular relationship. Gastroenterology 2009 Feb;136(2):523-9. • Barrett JC, , Parkes M, Georges M, Daly MJ. Genome-wide association defines more than 30 distinct susceptibility loci for Crohn's disease. Nature Genetics. 2008 Aug;40(8):955-62. • Fisher SA, , Parkes M, Satsangi J. Genetic determinants of ulcerative colitis include the ECM1 locus and five loci implicated in Crohn's disease. Nature Genetics 2008 Jun;40(6):710-2. • Parkes M, Barrett JC, Prescott NJ, . Sanderson J, Jewell DP, Satsangi J, Mansfield JC; Wellcome Trust Case Control Consortium, Cardon L, Mathew CG. Sequence variants in the autophagy gene IRGM and multiple other replicating loci contribute to Crohn's disease susceptibility. Nature Genetics. 2007 Jul;39(7):830-2 • Wellcome Trust Case Control Consortium [Primary Investigators: Bentley D, Parkes M, Pembrey M, Rahman N, Samani NJ, Stratton MR, Todd JA, Worthington J] Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls. Nature 2007; 447, 661-678 |
Start Year | 2008 |
Description | Microbiota partner |
Organisation | University of Edinburgh |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Providing stool and biopsy samples for microbiota analysis |
Collaborator Contribution | Sample processing and storage |
Impact | Publication: Kennedy NA, Lamb CA, Berry SH, Walker AW, Mansfield J, Parkes M..... Lees CW, (2018). The Impact of NOD2 Variants on Fecal Microbiota in Crohn's Disease and Controls Without Gastrointestinal Disease.. Inflammatory bowel diseases, 24 (3), pp. 583-592 |
Start Year | 2016 |
Description | The CD Response (part of the The Leona M. and Harry B. Helmsley Charitable Trust award) |
Organisation | Newcastle University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Providing guidance and support in set up and running of the study Dual aspect recruitment |
Collaborator Contribution | Patient recruitment into the IBD BioResource |
Impact | N/A |
Start Year | 2020 |
Description | The HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction |
Organisation | Cambridge University Hospitals NHS Foundation Trust |
Country | United Kingdom |
Sector | Public |
PI Contribution | -Providing the clinical and research collaboration network -Providing lifestyle, clinical and genetic/genomic information on IBD Cohorts -Encouraging the use of resulting resources by the research community -Overseeing and coordinating data access applications |
Collaborator Contribution | -Providing overall management of the programme -Providing infrastructure and technical aspects of the programme -Ensuring public and patient involvement in the programme -Encouraging the use resources by Industry and Pharma |
Impact | N/A |
Start Year | 2019 |
Description | The HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction |
Organisation | Crohn's and Colitis UK |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | -Providing the clinical and research collaboration network -Providing lifestyle, clinical and genetic/genomic information on IBD Cohorts -Encouraging the use of resulting resources by the research community -Overseeing and coordinating data access applications |
Collaborator Contribution | -Providing overall management of the programme -Providing infrastructure and technical aspects of the programme -Ensuring public and patient involvement in the programme -Encouraging the use resources by Industry and Pharma |
Impact | N/A |
Start Year | 2019 |
Description | The HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction |
Organisation | Health Data Research UK |
Country | United Kingdom |
Sector | Private |
PI Contribution | -Providing the clinical and research collaboration network -Providing lifestyle, clinical and genetic/genomic information on IBD Cohorts -Encouraging the use of resulting resources by the research community -Overseeing and coordinating data access applications |
Collaborator Contribution | -Providing overall management of the programme -Providing infrastructure and technical aspects of the programme -Ensuring public and patient involvement in the programme -Encouraging the use resources by Industry and Pharma |
Impact | N/A |
Start Year | 2019 |
Description | The HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction |
Organisation | Microsoft Research |
Department | Microsoft Research Cambridge |
Country | United Kingdom |
Sector | Private |
PI Contribution | -Providing the clinical and research collaboration network -Providing lifestyle, clinical and genetic/genomic information on IBD Cohorts -Encouraging the use of resulting resources by the research community -Overseeing and coordinating data access applications |
Collaborator Contribution | -Providing overall management of the programme -Providing infrastructure and technical aspects of the programme -Ensuring public and patient involvement in the programme -Encouraging the use resources by Industry and Pharma |
Impact | N/A |
Start Year | 2019 |
Description | The HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction |
Organisation | Privitar |
Country | United Kingdom |
Sector | Private |
PI Contribution | -Providing the clinical and research collaboration network -Providing lifestyle, clinical and genetic/genomic information on IBD Cohorts -Encouraging the use of resulting resources by the research community -Overseeing and coordinating data access applications |
Collaborator Contribution | -Providing overall management of the programme -Providing infrastructure and technical aspects of the programme -Ensuring public and patient involvement in the programme -Encouraging the use resources by Industry and Pharma |
Impact | N/A |
Start Year | 2019 |
Description | The HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction |
Organisation | The Wellcome Trust Sanger Institute |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | -Providing the clinical and research collaboration network -Providing lifestyle, clinical and genetic/genomic information on IBD Cohorts -Encouraging the use of resulting resources by the research community -Overseeing and coordinating data access applications |
Collaborator Contribution | -Providing overall management of the programme -Providing infrastructure and technical aspects of the programme -Ensuring public and patient involvement in the programme -Encouraging the use resources by Industry and Pharma |
Impact | N/A |
Start Year | 2019 |
Description | 'Ask the expert' webinar |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | To celebrate World IBD Day, the IBD BioResource (Miles Parkes and Laetitia Pele) took part in a 'Questions about research into inflammatory bowel disease? Ask the expert' webinar organised by NIHR CRN East of England, where we covered topics dealing with IBD BioResource, the microbiome, AI & getting involved in research in general. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.youtube.com/watch?v=SxQXzWaynTQ |
Description | APAM 2021 - The 114th Annual Meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To update the Physician and Gastroenterology communities about the work of IBD BioResource, describe our partnership with Gut Reaction and share the aspirations of the Gut Reaction programme. |
Year(s) Of Engagement Activity | 2021 |
URL | https://aopgbi.org/meetings-events/annual-meeting/registration/ |
Description | BSG 2019 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To update the Gastroenterology community about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2019 |
Description | BSG Campus 2021 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To update the Gastroenterology community about the work of IBD BioResource (both Main cohort and Inception) and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2021 |
URL | https://bsg.eventsair.com/QuickEventWebsitePortal/bsg-annual-meeting-2020/bsg-campus-programme/Agend... |
Description | BSG Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Research coordinators to attend to update the professional community on the progress of IBD BioResource |
Year(s) Of Engagement Activity | 2016,2017,2018,2019 |
Description | BSG Investigator meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To update the Gastroenterology community about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2018,2019,2020 |
Description | BSI Barrier Immunity |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | To let the Immunology community know about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2019 |
Description | British Society of Gastroenterology |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Research Co-ordinators attended the BSG conference with a poster and information, aimed at raising awareness of the study to professionals and clinicians |
Year(s) Of Engagement Activity | 2016 |
Description | British Society of Gastroenterology Investigator Meeting 2022 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Invited IBD BioResource (Miles Parkes) and Gut Reaction Talks (Laetitia Pele) |
Year(s) Of Engagement Activity | 2022 |
Description | Cambridge Biomedical Research Centre open evening |
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 | During this open evening, we discussed the results of the 'Patient involvement in Research day' and introduce the aims and aspirations of the Health Data Research Hub for IBD. |
Year(s) Of Engagement Activity | 2019 |
Description | Crohn's & Colitis UK Patient Involvement in?Research Day 2019 |
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 | Patient Involvement in Research Day We took part in a 'Patient Involvement in Research day' organised by Crohn's & Colitis UK. Following a live-streamed presentation where we described the aims of IBD BioResource and its vision for the future of the Health Data Research Hub for IBD, patients were then invited to take part in a short online survey. The topics covered 'access to medical and health records', 'long term storage and access to information/data' and 'genetic data, feedback and implication'. We have now obtained the feedback and views from more than 850 patients. |
Year(s) Of Engagement Activity | 2019 |
Description | Crohn's & Colitis UK Patient Involvement in?Research Day 2020 |
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 | Through the means of virtual posters, we took part in a 'Patient Involvement in Research day' organised by Crohn's & Colitis UK to: -update the IBD patient community about the work of IBD BioResource -describe our partnership with Gut Reaction -share the aspirations of the Gut Reaction programme |
Year(s) Of Engagement Activity | 2020 |
URL | https://crohnsandcolitis.org.uk/research/research-involvement-opportunities/patient-involvement-in-r... |
Description | Crohn's & Colitis UK Patient Involvement in?Research Day 2021 |
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 | Describe the aspirations of our partner Gut Reaction and showcase how Patient data can drive development of new treatments. |
Year(s) Of Engagement Activity | 2021 |
URL | https://www.crohnsandcolitis.org.uk/research/research-involvement-opportunities/patient-involvement-... |
Description | Crohn's and Colitis Awareness week 2021 |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | News Piece to celebrate Crohn's and Colitis Awareness week, raise awareness about IBD and describe how IBD BioResource is contributing |
Year(s) Of Engagement Activity | 2021 |
URL | https://bioresource.nihr.ac.uk/news/crohn-s-and-colitis-awareness-week/ |
Description | Crohn's and Colitis news story |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | We contributed a news story led by Crohn's and Colitis UK that highlighted how Gut Reaction evolved to support better understanding and treatments for Crohn's and Colitis. |
Year(s) Of Engagement Activity | 2022 |
URL | https://crohnsandcolitis.org.uk/news-stories/blog-posts/gut-reaction-blog |
Description | Crohn's and colitis awareness week 2022 |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | To raise awareness about Crohn's and Colitis during the Crohn's and Colitis awareness week NIHR BioResource released a news piece on their website to highlight how the work of IBD BioResource and Gut reaction aim to improve the lives of people living with Crohn's and Colitis. |
Year(s) Of Engagement Activity | 2022 |
URL | https://bioresource.nihr.ac.uk/news/crohn-s-and-colitis-awareness-week/ |
Description | Dr Falk Pharma Symposium 214: Inflammatory Bowel Disease: From Pathophysiology to Personalized Medicine |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To update the Gastroenterology community about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2019 |
Description | Facebook Live Q&A on 'Crohn's and colitis and Corona virus' |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Facebook live event organised by Crohn's and colitis UK where Miles Parkes and colleagues discussed their involvement in COVID19 and IBD studies (e.g. COVID19 IBD Registry tool for patients and IBD drug therapies and COVID-19), and the contribution of IBD BioResource. |
Year(s) Of Engagement Activity | 2020 |
Description | Get to know the inflammatory bowel disease (IBD) team at the NIHR BioResource |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | The IBD BioResource team is very proud to have been given the opportunity to showcase their work in a news article that has been published by the broader NIHR BioResource, under which we operate. We have been sharing 'what a regular day looks like for the IBD team' and 'what we find the most challenging and rewarding'. |
Year(s) Of Engagement Activity | 2023 |
URL | https://bioresource.nihr.ac.uk/news/get-to-know-the-inflammatory-bowel-disease-ibd-team-at-the-nihr-... |
Description | Health Data Research Hub for IBD Patient Advisory Group Meeting |
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 | First meeting with the HDR Hub for IBD's patient advisory group to introduce and discuss the involvement and aims of NIHR IBD BioResource in the HDR IBD Hub. |
Year(s) Of Engagement Activity | 2020 |
Description | IBD BioResource 5 year anniversary Newsletter |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | May 2021 marked the 5-year anniversary national roll out of IBD BioResource. To celebrate our contribution to 5 years of IBD research, we wrote a special newsletter. |
Year(s) Of Engagement Activity | 2021 |
URL | https://create.piktochart.com/output/54371528-ibd-bioresource-newsletter-5-year-anniversary-may-2021 |
Description | IBD BioResource 5 year anniversary news piece |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | News piece shared on various social media platforms to mark IBD BioResource 5 year anniversary and to share the achievements to date, on World IBD day. |
Year(s) Of Engagement Activity | 2021 |
URL | https://bioresource.nihr.ac.uk/news/ibd-bioresource-celebrates-5-years-contributing-to-crohn-s-and-c... |
Description | IBD BioResource Facebook account |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | To engage with the general public and the patient community. To promote and update about the IBD BioResource progress. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.facebook.com/IBDBioresource/ |
Description | IBD BioResource Twitter account |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To promote and update the IBD BioResource progress. To engage with the wider community. |
Year(s) Of Engagement Activity | 2018 |
URL | https://twitter.com/IBD_BioResource |
Description | IBD BioResource network created on LinkedIn |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | To update and promote the progress of the IBD BioResource. To engage further with members of its network. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.linkedin.com/in/ibd-bioresource-b011a0157/ |
Description | IBD BioResource website |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | To promote the IBD BioResource and update on is progress. |
Year(s) Of Engagement Activity | 2016,2017,2018,2019 |
URL | http://www.ibdbioresource.nihr.ac.uk/ |
Description | IBD Dialogue |
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 | On November 20th 2023, 15 IBD BioResource participants, 6 gastroenterologists and 3 genetics researchers joined members of the Wellcome Connecting Science Engagement and Society team at the Wellcome Genome Campus in Cambridgeshire. The purpose of the workshop was to inform a helpful and reassuring process for how the IBD BioResource shares genetic feedback related to additional findings with the study participants who have opted in to receive it, and to provide learnings for the wider field of genomic research into common, complex conditions.The one day workshop involved a mix of presentations, Q&As and facilitated small group discussions and activities. Wellcome Connecting Science worked with the Sanger Institute Human Genetics team and the IBD BioResource to commission Hopkins Van Mil to design facilitate and report on the workshop. |
Year(s) Of Engagement Activity | 2023 |
Description | IBD PATIENT INVOLVEMENT IN RESEARCH DAY |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Research coordinators to attend to raise awareness of the IBD BioResource platform within the patient community |
Year(s) Of Engagement Activity | 2018 |
Description | IBD World Day 2022 |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | To celebrate World ID Day, IBD BioResource released a newsletter highlighting the progress of IBD BioResource |
Year(s) Of Engagement Activity | 2022 |
URL | https://create.piktochart.com/output/58693777-ibd-bioresource-newsletter-2022-world-ibd-day |
Description | IBD genetic feedback workshop creates an open conversation between patients and researchers |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Communication piece reporting back on the IBD Dialogue Event and launching the resulting report. |
Year(s) Of Engagement Activity | 2024 |
URL | https://bioresource.nihr.ac.uk/news/ibd-genetic-feedback-workshop-creates-an-open-conversation-betwe... |
Description | Immunogenomics Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Research Co-ordinators attended Immunogenomics conference to raise awareness of the resource that scientists/clinicians/industry could access |
Year(s) Of Engagement Activity | 2017 |
Description | Immunogenomics of Disease 2019 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | To let the Genomics community know about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2019 |
Description | Immunogenomics of Disease: Accelerating to Patient Benefit (Virtual Conference) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | To update the research community about the work of IBD BioResource, describe our partnership with Gut Reaction and share the aspirations of the Gut Reaction programme. |
Year(s) Of Engagement Activity | 2021 |
URL | https://coursesandconferences.wellcomegenomecampus.org/our-events/immunogenomics-of-disease21/ |
Description | Interview: Professor Miles Parkes |
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 | Miles Parkes gave an interview to talk about his role in Gut Reaction, and why improving diagnostic and treatment options for people living with IBD is so important. |
Year(s) Of Engagement Activity | 2021 |
URL | https://gut-reaction.org/meet-our-team-professor-miles-parkes/ |
Description | Medicine Research Day |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | To update the department of Medicine about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2018,2019 |
Description | Midland Gastroenterology Society summer Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Research Co-ordinators to attend meeting to raise awareness of the resource that scientists/clinicians/industry could access |
Year(s) Of Engagement Activity | 2018 |
Description | Milner Therapeutics Symposium |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | To showcase the work of IBD BioResource and encourage Industries access to the IBD BioResource panel. |
Year(s) Of Engagement Activity | 2018 |
Description | Milner Therapeutics Symposium 2019 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | To showcase the work of IBD BioResource and encourage Industries access to the IBD BioResource panel. |
Year(s) Of Engagement Activity | 2019 |
Description | Milner Therapeutics Symposium 2020 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | To showcase the partnership between NIHR IBD BioResource and the HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction, and encourage Industries to access the Gut Reaction resources. |
Year(s) Of Engagement Activity | 2020 |
Description | Milner Therapeutics Symposium 2021 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | To showcase the partnership between NIHR IBD BioResource and the HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction, and encourage Industries to access the Gut Reaction resources. |
Year(s) Of Engagement Activity | 2021 |
Description | Milner Therapeutics Symposium 2022 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | To showcase the partnership between NIHR IBD BioResource and the HDR UK Hub for Inflammatory Bowel Disease - Gut Reaction, and encourage Industries to access the Gut Reaction resources. |
Year(s) Of Engagement Activity | 2022 |
Description | Mucosal Immunology Course and Symposium |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | To let the Immunology community know about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2018 |
Description | NIHR Newsletter |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To provide an update on who is part of the IBD BioResource and what it does. |
Year(s) Of Engagement Activity | 2018 |
Description | New Scientist live Show 2019 |
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 | NIHR BioResource and IBD BioResource together held a stand at the New Scientist Live across the 4 days. Hands-on activity and interactions with members of the NIHR and IBD BioResource provided a great opportunity for the public to know about the work we do but also to understand what Research is, what the benefits are and what taking part involves. |
Year(s) Of Engagement Activity | 2019 |
Description | News Piece on How the pandemic affected the IBD BioResource |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Reflection on how the pandemic affected the IBD BioResource, its research and recruitment activities. |
Year(s) Of Engagement Activity | 2021 |
URL | https://bioresource.nihr.ac.uk/news/ibd-bioresource/https://bioresource.nihr.ac.uk/news/ibd-bioresou... |
Description | Nutrition Society and BSG Winter Conference: Diet and Digestive Disease. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To let the Nutrition and Gastroenterology communities know about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies |
Year(s) Of Engagement Activity | 2019 |
Description | Patients Newsletter |
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 | To update the current IBD BioResource registered patients on the progress of the work being carried out |
Year(s) Of Engagement Activity | 2019,2020 |
Description | Presentation to Gut Reaction Patient Advisory Panel |
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 | IBD BioResource gave a presentation about the steps involved in setting up NHS trust for the HDR UK for IBD - Gut Reaction. The following topics were covered: - Meeting prospective sites - Information and Governance approval - Data protection Impact Assessment - secure File Transfer Protocol set up - Data categories requested and type of electronic health records - Data review - Data transfer and storage |
Year(s) Of Engagement Activity | 2022 |
Description | Press Release |
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 | Media (as a channel to the public) |
Results and Impact | Press release to let the wider audience know about a very important milestone reached by the IBD BioResource and its network: 10,000 patients recruited |
Year(s) Of Engagement Activity | 2018 |
Description | Press Release |
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 | Media (as a channel to the public) |
Results and Impact | Press release to let the wider audience know about a very important milestone reached by the IBD BioResource and its network: 10,000 patients recruited |
Year(s) Of Engagement Activity | 2018 |
Description | Press Release |
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 | Media (as a channel to the public) |
Results and Impact | Press release to let the wider audience know that IBD BioResource and its network reached their initial recruitment target of 25,000 participants. |
Year(s) Of Engagement Activity | 2019 |
Description | Promotional video about the safe use of data |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Privitar video on Gut Reaction as a case study |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.privitar.com/customers/#:~:text=Gut%20Reaction&text=Patient%20trust%20and%20privacy%20is... |
Description | Public Engagement Event |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Research Co-ordinators attend local hospital open day, with a publicity stand. to raise awareness of the study. |
Year(s) Of Engagement Activity | 2016 |
Description | Public engagement at NIHR Bioresource event |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Public/other audiences |
Results and Impact | The IBD Bioresource coordinator team had a stand and presented information to interested members of the public |
Year(s) Of Engagement Activity | 2016 |
Description | Site Newsletter |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | To update the current IBD BioResource registered sites on the progress of the work being carried out |
Year(s) Of Engagement Activity | 2018,2019,2020 |
Description | UEG week 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Moderated posters on: FIRST LINE BIOLOGIC THERAPY IN IBD: A PROPENSITY SCORE ANALYSIS OF 12,747 PATIENTS IN THE UK IBD BIORESOURCE" SECOND LINE BIOLOGIC THERAPY IN IBD: A PROPENSITY SCORE ANALYSIS OF 3,410 PATIENTS IN THE UK IBD BIORESOURCE" |
Year(s) Of Engagement Activity | 2023 |
Description | United European Gastroenterology week 2022 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Posters on the IBD BioResource (Laetitia Pele et al) and Gut Reaction (Laetitia Pele et al) |
Year(s) Of Engagement Activity | 2022 |
Description | Wessex Mucosal Immunology Meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | To let the Immunology community know about the work of IBD BioResource and encourage the use of the IBD BioResource panel for downstream research studies. |
Year(s) Of Engagement Activity | 2018 |
Description | West Midlands Immunology Group symposium |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Research Co-ordinators to attend meeting to raise awareness of the resource that scientists/clinicians/industry could access. |
Year(s) Of Engagement Activity | 2018 |