UKCRC Tissue Directory & Co-ordination Centre Phase II
Lead Research Organisation:
University of Nottingham
Department Name: School of Computer Science
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Technical Summary
The Directory has been populated with over 100 HTRs and we are now able to evidence examples of research that have been directly enabled by the Directory. This objective will drive evolutionary change in the Directory, such as modifying the search and/or the data collection strategies. The drivers for change, however, will be an understanding and interaction with the views and behaviour of researchers, and this work will be led by UCL with the necessary technical support provided by the PDRA4 in Nottingham.
The task of data entry and manipulation remains a very labour-intensive process for HTRs, with the provision of even basic information such as age, gender and disease beyond the reach of many organisations. This underlying technical challenge can prevent HTRs from registering with the Centre and creates a significant restriction on their ability to respond to queries from researchers.
The Centre is one piece of a complex puzzle within the UK's governance, ethical and funding framework surrounding HTRs. There must be effective engagement and collaboration with the various bodies (Human Tissue Authority, Health Research Authority, UK Ethics Committee Authority, UKCRC Funders) in order to ensure that the change we believe is necessary can be achieved. The most effective route would be with agreement and support from these organisations. Our engagement strategy, within this objective, will focus on utilising these influencers to drive key messages into the community, but also seek opportunities where policy change could assist in delivering the Funders' vision.
The Centre will develop a business case examining funding opportunities, and options for generating income to prepare the Centre for a self-sustaining future. The day- to-day costs of the Directory will be made self-sustaining by 2020. This is required to ensure that the Centre is removed from the reliance on one group of funders.
The task of data entry and manipulation remains a very labour-intensive process for HTRs, with the provision of even basic information such as age, gender and disease beyond the reach of many organisations. This underlying technical challenge can prevent HTRs from registering with the Centre and creates a significant restriction on their ability to respond to queries from researchers.
The Centre is one piece of a complex puzzle within the UK's governance, ethical and funding framework surrounding HTRs. There must be effective engagement and collaboration with the various bodies (Human Tissue Authority, Health Research Authority, UK Ethics Committee Authority, UKCRC Funders) in order to ensure that the change we believe is necessary can be achieved. The most effective route would be with agreement and support from these organisations. Our engagement strategy, within this objective, will focus on utilising these influencers to drive key messages into the community, but also seek opportunities where policy change could assist in delivering the Funders' vision.
The Centre will develop a business case examining funding opportunities, and options for generating income to prepare the Centre for a self-sustaining future. The day- to-day costs of the Directory will be made self-sustaining by 2020. This is required to ensure that the Centre is removed from the reliance on one group of funders.
Organisations
- University of Nottingham (Lead Research Organisation)
- Cancer Research UK (Co-funder)
- Chief Scientist Office (Co-funder)
- Versus Arthritis (Co-funder)
- Public Health Agency (Co-funder)
- National Institute for Health Research (Co-funder)
- Welsh Government (Co-funder)
- British Heart Foundation (Co-funder)
- Wellcome Trust (Co-funder)
- FIND Diagnostics (India) (Collaboration)
- United Kingdom Research and Innovation (Collaboration)
Publications
Eklund N
(2020)
Extending the Minimum Information About BIobank Data Sharing Terminology to Describe Samples, Sample Donors, and Events
in Biopreservation and Biobanking
Lawrence E
(2020)
The Barriers and Motivators to Using Human Tissues for Research: The Views of UK-Based Biomedical Researchers.
in Biopreservation and biobanking
Sims JM
(2022)
Lessons learned from the COVID-19 pandemic about sample access for research in the UK.
in BMJ open
| Description | HRA / HTA Consultation |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Impact | The public consultation was to understand attitudes to samples and data linkage. This was raised by the project staff and I sat on the oversight group. |
| Description | UKAS Steering Group for ISO 20387 Accreditation |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | BBMRI ERIC CS IT Funding - contributing to a Common Service IT of BBMRI-ERIC |
| Amount | € 30,000 (EUR) |
| Organisation | European Commission |
| Sector | Public |
| Country | European Union (EU) |
| Start | 01/2019 |
| End | 12/2019 |
| Description | BY-COVID |
| Amount | € 12,000,000 (EUR) |
| Funding ID | 101046203 |
| Organisation | European Commission H2020 |
| Sector | Public |
| Country | Belgium |
| Start | 07/2022 |
| End | 09/2024 |
| Description | CO-CONNECT: COVID - Curated and Open aNalysis aNd rEsearCh plaTform |
| Amount | £4,091,229 (GBP) |
| Funding ID | MR/V03488X/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 10/2020 |
| End | 04/2022 |
| Description | Common Service IT |
| Amount | € 52,303 (EUR) |
| Organisation | Biobanking and Biomolecular Resources Research Infrastructure |
| Sector | Charity/Non Profit |
| Country | Austria |
| Start | 01/2021 |
| End | 12/2021 |
| Description | Common Service IT |
| Amount | € 53,768 (EUR) |
| Organisation | Biobanking and Biomolecular Resources Research Infrastructure |
| Sector | Charity/Non Profit |
| Country | Austria |
| Start | 01/2022 |
| End | 12/2022 |
| Description | Common Service IT |
| Amount | € 51,530 (EUR) |
| Organisation | Biobanking and Biomolecular Resources Research Infrastructure |
| Sector | Charity/Non Profit |
| Country | Austria |
| Start | 01/2020 |
| End | 12/2020 |
| Description | DARE: Creating the blueprint for a federated network of next generation, cross-council Trusted Research Environments. |
| Amount | £319,378 (GBP) |
| Funding ID | MC_PC_21028 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2022 |
| End | 08/2022 |
| Description | DEMISTIFI Multi Morbidity: DEfining MechanIsms Shared across mulTI-organ FIbrotic disease to prevent the development of long term multi-morbidity |
| Amount | £100,810 (GBP) |
| Funding ID | MR/V005324/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2020 |
| End | 01/2021 |
| Description | HDR Midlands |
| Amount | £3,509,811 (GBP) |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 04/2018 |
| End | 03/2023 |
| Description | HDR UK Sprint for Cohort Discovery |
| Amount | £25,791 (GBP) |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 08/2020 |
| End | 03/2021 |
| Description | MICA - DEfining MechanIsms Shared across mulTI-organ FIbrosis to prevent the development of long-term multi-morbidity DEMISTIFI-Multi Morbidity |
| Amount | £2,856,188 (GBP) |
| Funding ID | MR/W014491/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2021 |
| End | 10/2025 |
| Description | Research infrastructure services for rapid research responses to COVID-19 and other infectious disease epidemics (HORIZON-INFRA-2021-EMERGENCY-02) |
| Amount | € 20,998,624 (EUR) |
| Funding ID | 101046133 |
| Organisation | European Commission H2020 |
| Sector | Public |
| Country | Belgium |
| Start | 02/2022 |
| End | 01/2025 |
| Description | TRE-FX: Delivering a federated network of TREs to enable safe analytics |
| Amount | £562,457 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 10/2023 |
| Title | ATLAS |
| Description | A distributed tool for discovering data in some of the largest cohorts in the UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | None to date |
| URL | http://search.biobankinguk.org/bcrquest/ |
| Title | Tissue Directory |
| Description | The collection of aggregated data on sample holdings across the UK. First created in 2015 but has been undergoing refresh and further updates as part of this award. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2015 |
| Provided To Others? | Yes |
| Impact | Increased use of existing samples in the UK. |
| URL | http://directory.biobankinguk.org |
| Description | FindDX Directory |
| Organisation | FIND Diagnostics (India) |
| Country | Switzerland |
| Sector | Public |
| PI Contribution | A version of the UK Directory created for FIND DX. |
| Collaborator Contribution | https://vbd.finddx.org |
| Impact | The creation of a find directory: |
| Start Year | 2020 |
| Description | National Core Studies, COVID Collections |
| Organisation | United Kingdom Research and Innovation |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Working with the funded UKRI studies to get them registered in the Directory |
| Collaborator Contribution | A covid registry of samples from funded studies. |
| Impact | https://directory.biobankinguk.org/Search/Collections?ontologyTerm=COVID-19 |
| Start Year | 2020 |
| Title | API |
| Description | We are developing an Application Programming Interface (API) that can allow for the bulk upload of sample data to our Tissue Directory. This new feature will make it easier for sample resources to register and update their collection information. The license has not been established yet as only an initial beta version has been released so far. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2019 |
| Impact | None to date, just released. |
| Title | HDR UK Cohort Discovery |
| Description | The system allows researchers to find cohorts of patients via an online platform. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Impact | It is now embedded within the HDR Innovation Gateway. |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Link lite |
| Description | An open source version of the BC Platforms link software |
| Type Of Technology | Software |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | A POC for the HDR Innovation Gateway |
| Title | UKCRC Tissue Directory Open Source |
| Description | The main software for the Tissue Directory that integrates with the HDR UK Gateway |
| Type Of Technology | Software |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Driving access to resources in the UK. |
| URL | https://github.com/biobankinguk/biobankinguk |
| Description | Biobanking Strategic Review |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Tissue Directory and Coordination Centre came out the UKCRC Experimental Funder's findings from the report, UK Funder's Vision for Human Tissue Resources. The project was set out to make samples visible via the Tissue Directory, in order to use existing sample resources more efficiently. Now in its seventh year, the project has achieved its goal to establish a functioning directory which is constantly being improved through its user community (biobanks and researchers). The Directory fulfils the gap that was identified, as well as works together with other organisations to address other gaps and areas of improvement in the human biosample research space. The Strategic Review is a series of meetings with strategic stakeholders from over 15 organisations to identify what further gaps are necessary to address to improve research in the future. The first phase was consultation meetings to discuss biobanking coordination from their point of view. The second phase was a roundtable discussion collating the findings from these initial meetings in order to make an action plan. The third phase (forthcoming) will be the presentation of the action plan to the stakeholders to outline what work, if any, needs to happen to further improve biobanking coordination in the UK. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Biobanking UK Stall at Global Biobank Week |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The research team maintained a three-day exhibition stall at the 2018 Europe Biobank Week annual conference in Antwerp Belgium. The stall featured case study posters of biobanks from different parts of the UK, testing the UKCRC Tissue Directory via a facilitated time game, and the opportunity to speak with various staff on their particular expertise. The purpose of the stall was to promote the UK's biobanking research and improve the user experience when searching for samples on the UKCRC Tissue Directory. The primary impact was reaching and educating European industry researchers as to how to conduct more UK-based research. Building on the success of previous years' activities, the research team attended the 2019 Europe Biobank Week held in Lubeck, Germany in October. The team hosted a stand and over the course of three days highlighted the UKCRC TDCC's and BBMRI.uk's activities. Posters on successful case studies from previous UK Biobank of the Year Award winners were featured, and the team provided a number of engaging and interactive activities to draw in delegates to educate them about the project. The team demonstrated the Directory in action, solicited feedback on Directory-related content, and offered informal chats with the project's Director about the latest registration tools being developed by the team. The team also arranged for a previous UK Biobank of the Year Award winner to be available to answer questions about the award to increase exposure so that other countries might replicate the model and thereby encourage good biobanking practices throughout Europe. Additionally, the stall provided the opportunity for delegates to try out a newly-launched biobanking app game aimed at patients and the general public and the team also held joint activities with the BBMRI-ERIC's headquarters' stall directly adjacent for synergistic exposure and impact. |
| Year(s) Of Engagement Activity | 2018,2019 |
| Description | BiobankingUK Twitter Account |
| 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 | The purpose of the BiobankingUK Twitter account is to raise awareness of the project, keep stakeholders updated with developments in the project, publicise opportunities or events, connect with allied projects and organisations, and engage in discussions online about relevant topics to biobanking. This is an ongoing account which was set up in 2015. As of March 2022, the account has 1041 followers with over 2,725 profile views. The account's tweets had over 21,700 impressions, on average. In 2021, the account's top tweet gained 191,000 impressions (average for Feb 2022 was 6,491). |
| Year(s) Of Engagement Activity | 2018,2019,2020,2021,2022 |
| URL | https://twitter.com/BiobankingUK |
| Description | Developments in Biobanking: Fireside Chat Webinar Series |
| 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 | Based on feedback from the 2019 UK Biobanking Showcase, we have organised a series of webinars to raise the profile of biobanking projects in an informal setting, to promote networking and learning. Each session covers a themes in a facilitated discussion with a "special guest". These sessions provide the audience a chance to hear about different projects, ask questions, or contribute experience to shared problems. From Jan 2021 to Jan 2022 we schedule 6 events every-other month for 50 minutes during lunchtime hours. The topics covered included: Feb 2021 - Supplying fresh tissue at CBTM, Dr Krishnaa T. Mahbubani, Cambridge Biorepository for Translational Medicine April 2021 - Coordinating COVID-19 samples, Dr Sarah McDonald, MRC-University of Glasgow Centre for Virus Research (CVR) June 2021 - The Future of Biobanking coordination, Jessica Sims UKCRC Tissue Directory and Coordination Centre Sept 2021 - Biobanking for a longitudinal cohort, Dr. Sue Ring, Head of Laboratories and Executive Director of the Avon Longitudinal Study of Parents and Children (ALSPAC) at the University of Bristol Nov 2021 - Negative environmental impacts of biobanking, Dr Gabrielle Samuel is a Wellcome Research Fellow at the Department of Global Health and Social Medicine, King's College London. Jan 2022 - Managing access requests to your data and sample holdings. Dr Varsha Khodiyar, Data and Connectivity Project Manager for Data Access at Health Data Research UK |
| Year(s) Of Engagement Activity | 2021 |
| Description | Ontology Hackathon |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A hackathon between HDR UK, BBMRI UK and ELIXIR/EBI on data ontologies to enable discovery of phenotypic datasets |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation at Cryobiology 2018 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented Project at Cryobiology 2018, to researchers and specialists in the cryobiology field. Abstract: The UKCRC Tissue Directory: developing a platform for UK human sample discovery. Introduction: The UKCRC Tissue Directory and Coordination Centre coordinates Biobanking in the UK with the aim of improving the visibility and accessibility of human samples. One key way of doing this is via the UKCRC Tissue Directory (UKCRC TD), through which researchers can locate existing sample resources (Biobanks, sample holdings, clinical trials). To continually develop this initiative, we sought to capture the requirements of researchers who use human samples. Methods: The UKCRC TD is being continually developed under an agile project management process. An ethically-approved survey was circulated to UK based active biomedical researchers from academia or industry of post PhD level. The aim of the survey was to capture research motivators and barriers to human sample access. Results: The UKCRC TD was launched in 2016, and currently has over 260 Sample resources registered (March 2018). Metrics show around 20 UKCRC TD searches per day, indicating the growing importance of the platform for potential end-users. Survey results showed that sample users utilised a range of different sample resources, with self-collection being the most common method. Locality and available clinical data were the most cited reasons for current source choice with quality of sample listed as the sixth reason. 64% of respondents said they would consider using a different sample source in the future, with sample range being the most popular motivator cited, interestingly sample quality was listed as the second most popular reason to change sample resource. Conclusions: These results have important implications for the development of the UKCRC Tissue directory, by showing that researchers are willing to use new resources that are not local to them, indicating the potential need for a discovery platform. The motivations for sample resource choice will be further dissected in a series of follow up focus groups. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Presentation at Europe Biobank week 2018 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented findings from UK survey to European Biobanking community: "Motivations and Barriers to accessing Human Samples for UK Biomedical Research - how can we improve access?" Abstract Introduction Human samples are widely used in UK biomedical research and will become increasingly important in precision medicine. However, little is known about how researchers access these samples and what motivates them to use these sources. This research characterises the motivations and barriers to accessing and using human samples in the UK. Abstract content - material & methods (max: 50 words) * A survey was circulated to UK based biomedical researchers via relevant communication channels. The inclusion criteria were active biomedical researchers from academia or industry of post PhD level who were based in the UK. Willing participants were then invited to participate in follow up focus groups. results The 229 eligible respondents were primarily from academic institutions (89%), spanning different career stages and research interests. Results showed that sample users utilised a range of different sources, with locality and clinical data being the most cited reasons for source choice. 64% of respondents said they would use a different sample source in the future, with sample range being the most popular motivator cited. Time spent on ethical approval was the biggest barrier to sample access, with 38.8% of respondents citing it as a significant barrier to access. Suggested solutions to barriers elicited from focus groups will also be presented. conclusion These results have important implications for sample resources, by showing that researchers are willing to use new resources that are not local to them. We also show that time spent on ethical approval is seen as a bigger barrier to access than the cost or service from a sample resource. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Presentation at European Biobank Week |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented on the work of the UK with a particular focus on commercial engagement. |
| Year(s) Of Engagement Activity | 2018 |
| Description | UK Biobanking Showcase |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The 2018 UK Biobanking Showcase was a one-day conference attended by 180 people working in areas related to biobanking from across the country, including universities, the NHS, medical funders and different medical companies and organisations. The event sought to highlight some of the recent discussions and developments in biobanking including quality standards, financial sustainability, data management, collaborations and campaigns to improve public interactions. As with the previous year, the delegates heard from a range of speakers either conducting research in with human samples or working in biobanks. This year we also included more professional development related topics such as a MBA programme for research infrastructures and delegates also received CPD points for attending. Overall, the aim was to present practical information on the future possibilities of biobanking to support the ongoing work in the field. The 2019 Showcase for the first time was held over two days and included a free workshop on registering your resource in the Directory and a 5th anniversary celebratory dinner. The event was held in Nottingham rather than London and attracted 170 attendees from a similar diversity of backgrounds as previous years and featured 18 speakers and 16 exhibitors (industry, regulatory bodies, public private partnerships, etc.). Presentations focused on biobanking fundamentals such as what constitutes a Research Tissue Bank and the history of biobanking in the UK, practical content such as relationship building between academia and industry, regulations on data sharing, strategy development and impact measurement, researchers' attitudes to sample release, opportunities for pursuing relevant higher education, and current developments in the field. Feedback was very positive, particularly for the interactive debate session in which attendees of diverse backgrounds and experience discussed a controversial topic related to biobanking. The UK Biobank of the Year Award, as assessed by a panel convened by the UKCRC TDCC team, was presented at the end of proceedings. Delegates earned 5 CPD points for attending. The 2020 Showcase was held online over 5 days as a result of the ongoing COVID-19 pandemic. The event attracted up to 200 people for daily webinars and informal thematic and workshops. There were 11 speakers and 7 exhibitors. Presentations focused on current topics such as COVID-19, as well as biobanking fundamentals such as sustainability, access, and research ecosystem design. Feedback was very positive, and attendees liked the format of less event spread over a week. The UK Biobank of the Year Award, as assessed by a panel convened by the UKCRC TDCC team, was presented at the end of proceedings to Wales Cancer Bank. |
| Year(s) Of Engagement Activity | 2018,2019,2020 |
| Description | UK Biobanking Showcase Event website/social media platform |
| 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 | We created a website/social media platform dedicated for the UK Biobanking Showcase 2018 event. The website allowed for event delegates to interact in the month leading up to the event (and is open for a year after ward). Delegates were able to post notices in the noticeboard (such as job opportunities, free equipment available), make private meetings with each other, share contact information, and access additional documents related to presentations, speakers and exhibitors. On the day of the event delegates were able to participate in polls related to specific presentation sessions and submit questions for moderation during Q&A. The post-event feedback was positive especially in terms of making the event on the day more engaging. |
| Year(s) Of Engagement Activity | 2018,2019,2020,2021,2022 |
| URL | https://biobankinguk2019.pathable.com/ |
| Description | UKCRC TDCC website, blog, and Directory |
| 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 | The UKCRC TDCC website features information about biobanking for both the general public and professional practitioners. The website features a blog highlighting biobanking developments, including: regulations, infrastructure developments, relevant research, project organised events and resources. The website also features a Directory of biosample collections in the UK, the UKCRC Tissue Directory. This is an ongoing website which was created in 2015 |
| Year(s) Of Engagement Activity | 2018,2019,2020,2021,2022 |
| URL | https://biobankinguk.org/ |