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

创伤性脑损伤（TBI）是导致死亡和残疾的主要原因，每年使英国经济损失超过100亿英镑，全球经济每年损失超过4000亿美元。此外，创伤性脑损伤影响幸存者的终身健康（增加痴呆、癫痫和精神健康状况不佳的风险，降低预期寿命）。尽管实验室数据很有希望，但已经有多次失败和昂贵的药物试验，改善创伤性脑损伤治疗的进展缓慢。然而，最近的研究增加了我们对创伤后脑损伤如何发展的认识。因此，这是一个及时的机会，利用英国的研究优势来推进我们的诊断和治疗方法的发展，实现更多针对个人的治疗途径。英国tbi存储库和数据门户启用发现（TBI-REPORTER）是由英国领先的研究人员和利益相关者组成的联盟响应这一呼吁提出的建议。TBI- reporter将建立一个平台，促进整个生命周期的TBI研究。我们团队的广度使我们能够解决所有损伤严重程度和各种损伤情况下的创伤性脑损伤导致的残疾和早期死亡问题，包括以前服务不足的群体，如现任和前任军人和运动员，以及遭受亲密伴侣暴力的人群。为了实现这些目标，TBI- reporter将建立一个英国国家研究平台，包括：1)一个数据中心，用于大规模整理和管理TBI研究数据。我们将与英国痴呆症平台（DPUK）和英国健康数据研究（HDRUK）合作，将这项工作与现有的基础设施整合起来，与现有的英国NHS TBI数据集建立联系，包括创伤审计和研究网络（TARN）、重症监护国家审计和研究网络（ICNARC）和英国康复结果协作（UK ROC）。与DPUK的密切合作将允许无缝采用程序和协议，使研究人员首次能够简化访问大型链接的TBI数据集，并通过国际TBI研究计划（InTBIR）与国际合作伙伴联系。2)国家生物标志物资源，将利用TBI和痴呆症研究的专业知识，并与我们的数据中心连接，以：(i)协调大规模人体血液和其他样本的收集和处理，包括通过先进技术获得的样本，例如重症TBI患者脑压监测的透析液（脑微透析）；协调和规范脑成像数据的收集和分析（计算机断层扫描、磁共振和正电子发射断层扫描）；（iii）规范在专业组织库中整理和归档死后和手术组织样本。3)由NHS专科神经科学医院组成的实验医学网络，具有明确的早期“概念验证”研究能力，以支持对新型TBI诊断和治疗方法的研究。这些中心最初将包括6个探路者中心，但最终将扩展到12-16个医院站点——根据研究先进脑成像、生物标志物和TBI治疗的潜力选择。该网络将开发一个TBI患者的前瞻性原理验证队列，我们将收集广泛的临床和生物学数据，以证明该平台能够提供具有挑战性的概念验证研究，这将发展和完善未来的TBI研究。TBI REPORTER研究人员将通过项目指导委员会和咨询委员会成员参与现有的患者和公众代表网络，确保他们的利益——由强有力的信息治理、伦理批准和项目管理支持——在平台开发的每个阶段都是至关重要的。

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.