Building sustainable data infrastructure for traumatic brain injury research
TBI-REPORTER is a UK-wide research programme bringing together research data, biosamples and an experimental medicine network to accelerate traumatic brain injury research and support the development of new treatments.
Traumatic brain injury
UK-wide programme
Dedicated, branded TRE Hub
Infrastructure, data management, governance
Behind the programme sits a dedicated Trusted Research Environment and Data Hub. NDP provides the infrastructure, data management and operational governance that enables TBI-REPORTER to bring together valuable legacy datasets, support new prospective data collections and provide approved researchers with secure access to complex, multimodal data.
The science
Its research community
Its data access decisions
Secure infrastructure
Managed data services
Operational governance
TBI research generates complex data across multiple modalities, organisations and studies.
The challenge is not simply finding somewhere secure to store these data. A sustainable research programme needs to be able to bring existing datasets together, support data collection from studies that are recruiting today, accommodate new studies in the future and ultimately make those data discoverable and securely accessible for secondary research.
Building separate infrastructure and governance processes for every study would duplicate effort and risk leaving valuable datasets fragmented when individual projects end.
TBI-REPORTER addresses this through a dedicated TRE Hub underpinned by NDP.
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A core function of the TBI-REPORTER Data Hub is to provide a long-term home for valuable data generated through previous TBI studies.
This allows datasets generated through different studies and institutions to become part of a sustainable research resource rather than remaining isolated within individual projects.
TBI-REPORTER identifies this as an important part of its model — a route for FAIR storage and secondary use of data from completed studies, with established processes intended to improve efficiency, reduce costs and maintain data security.
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From prospective data collection to a research-ready asset
The TBI-REPORTER Experimental Medicine Network is developing the Prospective Proof of Principle (3P) cohort, designed around rich and granular data collection and intended to demonstrate the network’s capability to support demanding experimental medicine studies and early-phase trials.
Rather than treating these as separate data sources, the pipeline brings information from different systems together systematically — a repeatable model for ongoing and future data collections.
Clinical and research data · hosted by NDP
Cognitive assessment data
Combined, research-ready 3P cohort data
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NDP provides the operational governance underpinning the Hub, including data deposit agreements, data access processes, information governance support and management of secure researcher access.
Data providers retain responsibility for approving use of their datasets. Once approval requirements are satisfied, NDP manages the operational process required to make the approved data available securely.
Bona fide researchers affiliated with appropriate research organisations can apply for data, with approved datasets made available within the TBI-REPORTER TRE.
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Approved researchers work in TBI-REPORTER’s own branded secure environment through remote virtual desktops — participant-level data never leaves the secure infrastructure.
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Securely storing data is only valuable if researchers can understand what exists. NDP manages the discovery capability supporting TBI-REPORTER, so researchers can explore the available collections before applying for access.
As NDP’s cross-Hub Data Discovery develops, individual Hubs gain greater visibility of their assets across the wider neurological research landscape.
Compare collections across characteristics and modalities, including:
TBI-REPORTER shows how a research programme can establish a sophisticated data capability without independently building every component required to operate a TRE.
NDP provides the infrastructure and specialist operational capability, while TBI-REPORTER retains its own identity, scientific leadership, research community and data governance.
Infrastructure reused across studies
Governance that matures over time
Data managed beyond project lifetimes
Resources focused on the research
NDP manages the complexity behind the data. TBI-REPORTER can focus on advancing TBI research.
Whether you are establishing a new research programme, bringing together existing datasets or need sustainable infrastructure for prospective data collection, NDP can provide a managed TRE Hub tailored to your requirements.
From secure infrastructure and governance through to multimodal data management, discovery and researcher access.
