Barts BioResource

Researchers

Have you thought about using the Barts BioResource for your next study? The Barts BioResource is poised to support your next research project with a panel of volunteers who can be selected based on data, biosamples and tissue samples.

Barts BioResource (BBR) access for internal and external researchers

Executive summary 

BBR access principles are: Fair, transparent, maximising research opportunities.

BBR access applications can be made by internal and external applicants. External applicants are strongly encouraged to collaborate with at least one internal expert (Barts Health and/or Queen Mary University of London). This collaborative approach was a non-negotiable ask by our peer review committee when presenting the very first BBR (previously known as Barts Cardiovascular Registry = BCVR) research protocol; in addition, this approach has been generally supported by our Barts Patient and Public Advisory Group (PPAG).

Access applications can be submitted through a simple electronic access form. This application will then be reviewed by one of two independent Chairmen of the Barts BioResource Peer Review Committee: two independent reviewers will ensure the proposed research is in scope with the Barts BioResource research protocol and patients’ consent and may comment on the scientific rigor; Chairmen’s action can happen if no re-contact of patients is required and if no depletable samples are requested (bloods, tissue etc). This peer review outcome and feedback will be passed on to the Barts BioResource operational group who will assess feasibility of the request and provide bespoke costing on a cost-recovery model as appropriate.

Barts Health NHS Trust as sponsor can view access applications, the peer review outcome and feedback and the comments from the Barts BioResource operational group; Following communication of the access application outcome with the lead research applicant, if the applicants agree to move forward, a Barts BioResource material transfer agreement (MTA) [template available on request from contact.bartsbioresource@qmul.ac.uk] is required prior to data or biosamples release.

Background

BBR access principles: Fair, transparent, maximising research opportunities.

BBR access applications can be made by internal and external applicants. External applicants are strongly encouraged to collaborate with at least one internal expert (Barts Health and/or Queen Mary University of London). This collaborative approach was a non-negotiable ask by our peer review committee when presenting the very first BBR (previously known as Barts Cardiovascular Registry = BCVR) research protocol; in addition, this approach has been generally supported by our Barts Patient and Public Advisory Group (PPAG). 

Barts Health NHS Trust is the sponsor of the Barts BioResource. The Barts BioResource will require to charge for research applications and data access on a cost-recovery basis where appropriate which includes supporting the sustainability of the Barts BioResource. Commercial research collaborations will consider guidance from the NHS on how arrangements can ensure a fair public-private partnership that benefits patients, the public and the NHS (see e.g. NHS Code of Conduct for Data-driven Health and Care Technology and NHS Guidance on Creating the right framework to realise the benefits for patients and the NHS where data underpins innovation). 

The Barts BioResource will never “sell” patient data – costing models are in the spirit of partnership, cost-recovery and ensuring sustainability of the valuable Barts BioResource in respect of staffing and associated infrastructure.

We are building a bespoke Barts BioResource Access Management System (AMS) that will facilitate researcher access in the future. Until this is available, we strongly recommend researchers to contact the Barts BioResource team via contact.bartsbioresource@qmul.ac.uk to discuss projects for initial informal feedback on feasibility, timelines, cost estimates where appropriate BEFORE submission of an access application.

Once the new Barts BioResource AMS is live, most research proposals will follow one of the below scenarios. On the new AMS any researcher wishing to work with Barts BioResource data or biosamples will need to register as ‘bone fide researchers’ on the Barts BioResource AMS before any access application submissions; This process only needs to happen once and is not required for future but researchers will need to inform the Barts BioResource via the AMS of any change in contact details; Once researchers have been approved as a ‘bona fide researcher’ they will get access to the Barts BioResource cohort selection tool. This will allow the researcher to check availability of research ready data and ensure the research project is feasible prior to access application submission. It also allows to select a cohort for this research application (e.g. type of patients, type of variables requested for the research project).

The Barts BioResource team is also working on allowing researchers to perform the analysis on Barts BioResource infrastructure to avoid moving data to the researchers. Should this not be possible, data can be shared with researchers under the MTA.

Costs for registration and access applications: (NB. The costs advised below are outline and under review and are subject to change)

It is envisaged to have no charge for the registration process to become a registered Barts BioResource ‘bona fide researcher’ but to charge £500 inclusive of VAT for each access application as a handling fee. This does not guarantee or cover the costs for the actual research project and data exchange, see further details below.

Scenarios:

Scenario 1: Researchers require access to research ready data only (non-depletable resource)

This scenario will be straightforward to approve by Chairmen’s action of the Barts BioResource Peer Review Committee with oversight by the sponsor and opportunity of input from patients; The Barts BioResource operational group will consider the peer review recommendation and outcome, confirm feasibility and provide feedback to researchers about timeline, costing and ensure exchange of the material transfer agreement before data exchange. As mentioned above the access application submission is likely to be £500 inclusive of VAT, the fixed fee for receiving research-ready Barts BioResource data is likely to be £5000 (including VAT) independent of sample size, number of variables requested.

Scenario 2: Researchers require access to data only, at least some of which are not research ready (non-depletable resource)

This scenario will be straightforward to approve by Chairmen’s action of the Barts BioResource Peer Review Committee with oversight by the sponsor and opportunity of input from patients; The Barts BioResource operational group will consider the peer review recommendation and outcome, confirm feasibility of making the required data research-ready and provide feedback to researchers about timeline, costing and ensure exchange of the material transfer agreement before data exchange. As mentioned above the access application submission is likely to be £500 inclusive of VAT, the fixed fee for receiving research-ready Barts BioResource data is likely to be £5000 (including VAT) independent of sample size, number of variables requested and an additional bespoke cost will be determined based on the specifics of the data request that is not research-ready yet in the Barts BioResource.

Scenario 3: Researchers require access not only to (research-ready) data, but also to depletable resources (e.g. biosamples, tissue, but also re-contacting BBR patients for third-party studies)

This scenario requires one of the Chairmen of the Barts BioResource Peer Review Committee to determine at least two independent (to this research project) reviewers; There is oversight by the sponsor and an opportunity for input from patients; The Barts BioResource chairman summarises the reviews and provides a recommendation to the Barts BioResource operational group. The review focuses more on scientific merit as for scenarios 1 and 2, as the Barts BioResource needs to ensure the best use of depletable resources. The Barts BioResource operational group will consider the peer review recommendation and outcome, confirm feasibility and provide feedback to researchers about timeline, costing and ensure exchange of the material transfer agreement before data and possibly data exchange. As mentioned above the access application submission is likely to be £500 inclusive of VAT, the fixed fee for receiving research-ready Barts BioResource data is likely to be £5000 (including VAT) independent of sample size, number of variables requested and an additional bespoke cost will be determined based on the specifics of the research access application. 

Scenario 4: Researchers require access to not yet recruited patient groups

Some researchers may wish to use the Barts BioResource platform to recruit samples from patient groups where too few samples have been collected to date. In this case, researchers must contact the Barts BioResource team to discuss feasibility of targeting recruitment and sample collection in such patient groups at Barts Health NHS Trust. This would require a bespoke cost determined based on the specifics of the request. An access application would be submitted under one of the three scenarios above enrolment and sample collection has been completed. 

Return of data

For all scenarios above, researchers are typically required as per BBR MTA to return newly derived data to the Barts BioResource.