TBI-REPORTER (UK-TBI REpository and data PORTal Enabling discoveRy)

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Traumatic brain injury (TBI) is a leading cause of death and disability, costing the UK economy over £10 billion/ year, and the global economy over $400 billion annually. Further, TBI impacts the lifelong health of survivors (increasing risk of dementia, epilepsy and poor mental health and reducing life expectancy). Despite promising laboratory data there have been multiple failed and expensive drug trials, and progress in improving TBI treatments has been slow. Nevertheless, recent studies have increased our knowledge of how TBI develops after the injury impact. There is, therefore, a timely opportunity to capitalise on UK research strengths to advance the development of our approaches to diagnosis and treatment, enabling more person specific treatment pathways.UK-TBI REpository and data PORTal Enabling discoveRy (TBI-REPORTER), is a proposal from a consortium of leading UK investigators and stakeholders in response to this call. TBI-REPORTER will establish a platform to facilitate research in TBI across the lifespan. The breadth of our team allows us to address disability and early mortality from TBI across all injury severities and a complete range of injury contexts, including previously underserved groups such as current and former military personnel and athletes, and those exposed to intimate partner violence. To achieve these aims, TBI-REPORTER will establish a UK national research platform comprising:1) A Data Hub to collate and curate TBI research data at scale. We will integrate this effort with existing infrastructure, in partnership with Dementias Platform UK (DPUK), and Heath Data Research UK (HDRUK) to establish linkage with existing UK NHS TBI datasets, including Trauma Audit and Research Network (TARN), Intensive Care National Audit and Research Network (ICNARC), and the UK Rehabilitation Outcomes Collaborative (UK ROC). Close collaboration with DPUK will allow seamless adoption of procedures and protocols allowing investigators - for the first time - streamlined access to large linked TBI datasets, and to international partners through the International Initiative for TBI Research (InTBIR).2) A National Biomarker Resource which will draw on expertise from both TBI and dementia research and link to our Data Hub to: (i) co-ordinate the collection and processing of human blood and other samples at scale, including those obtained via advanced techniques, such as dialysis fluid from brain pressure monitoring in critically injured patients with TBI (brain microdialysis); (ii) co-ordinate and standardise brain imaging data collection and analysis (computed tomography, magnetic resonance and positron emission tomography); (iii) standardize collation and archiving of postmortem and surgical tissue samples in specialist tissue banks.3) An Experimental Medicine Network of research-ready NHS specialist neuroscience hospitals, with explicit early "proof of concept" study capabilities to support research into novel TBI diagnostic and treatment approaches. These will initially comprise six Pathfinder Centres, but eventually expand to 12-16 hospital sites - selected by potential to study advanced brain imaging, biomarkers and TBI treatments. The Network will develop a Prospective Proof of Principle cohort of people with TBI, in whom we will gather extensive banked clinical and biological data to demonstrate the platform is capable of delivering challenging proof of concept studies which will develop and refine future TBI research.TBI REPORTER investigators will engage their existing networks of patient and public representatives through a programme steering committee and advisory board membership, ensuring their interests - supported by robust information governance, ethical approvals and programme management - are paramount at each stage of platform development.