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.
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 seamless adoption of data pipelines to access large datasets and linkage to international partners through the International Initiative for TBI Research (InTBIR).
TBI-REPORTER uses data to:
- Support and accelerate collaborative research in TBI through development of a national TBI Data Hub and Biomarker Resource, and 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.