Traumatic Brain Injury (TBI) is a major cause of death and disability and can lead to long-term health issues such as dementia, epilepsy, mental health problems, and a shorter lifespan. Whilst the research community has gained some understanding of the underlying causes of TBI, progress in drug trials and clinical care has been slow. However, there are research projects that have generated lots of valuable information that could be better utilised outside of their original studies.

The UK TBI REpository and data PORTal Enabling discoveRy (TBI-REPORTER) has been funded to enable researchers to transform the way survivors of TBI are diagnosed and treated in the UK.

Programme Overview

TBI-REPORTER is led by the University of Cambridge, University of Glasgow, Imperial College London, and the University of Sheffield, with coordination of PPIE activities provided by the United Kingdom Acquired Brain Injury Forum (UKABIF). It is a multidisciplinary, multi-centre, UK-wide, national collaboration of over 50 investigators with demonstrable, field-leading experience.

TBI-REPORTER will collate and curate TBI research data at scale and consists of three main program cores: a central Data Hub; a national Biomarkers Resource; and an Experimental Medicine Network, with all three supported by a strong Patient and Public Involvement and Engagement (PPIE) strategy. The TBI-REPORTER Data Hub, in particular, will interact with HDR UK.

  • TBI-REPORTER uses data to:

    • Support and accelerate collaborative research in TBI through the development of a national TBI Data Hub and Biomarker Resource, and the creation of an Experimental Medicine Network supporting early translational research through collaboration between academic and industrial partners.
    • Build on our collaboration’s substantial and demonstrable experience in epidemiology, cohort management, informatics, record linkage research, and database interoperability, to collate and make discoverable existing and future research and health records’ datasets of relevance to TBI.
    • Show varying complexity, from demographics to high-resolution ICU data and advanced neuroimaging.
    • Capture across the patient journey, ranging from pre-injury, primary care records to lifelong outcomes and health resource utilisation.

  • The TBI-REPORTER Data Hub will be a dedicated, theme-specific node within the highly successful Dementias Platform UK (DPUK) Data Portal. It will integrate with existing infrastructure in the DPUK Trusted Research Environment within the framework of the UK Secure electronic Research Platform (UK SeRP), and work with HDR UK to establish linkage with existing UK datasets, including Trauma Audit and Research Network (TARN), Intensive Care National Audit and Research Network (ICNARC), and the UK Rehabilitation Outcomes Collaborative (UK ROC).

    This collaboration with DPUK will enable the seamless adoption of data pipelines to access large datasets and linkage to international partners through the International Initiative for TBI Research (InTBIR).

  • PPIE and lived experience are central to all that TBI-REPORTER does, and there is a commitment to ensure that all research that is collected will include meaningful patient involvement aligned with the UK standards for PPIE. The broad range of research and populations impacted by TBI means that TBI-REPORTER’s outputs will benefit large and diverse populations.

    TBI-REPORTER’s PPIE panel will be actively involved in TBI-REPORTER activities through platform development advice and support the collaboration to deliver meaningful and impactful results. Their involvement will:

    • Influence the kinds of data collected from research groups.
    • Help prioritise research areas of value to patients.
    • Ensure the operation of the platform and sharing of resources is ethical and informed by lived experience.
    • Support efficient dissemination of TBI-REPORTER’s impact on patients and the public.

Further information:

Visit the TBI-REPORTER website

Follow TBI-REPORTER on X

Contact the TBI-REPORTER team