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，每年给英国经济造成超过100亿GB的损失，给全球经济造成超过4000亿美元的损失。此外，创伤性脑损伤影响幸存者的终身健康(增加患痴呆症、癫痫和精神健康不良的风险，并减少预期寿命)。尽管实验室数据前景看好，但已经有多项失败和昂贵的药物试验，而且在改善脑损伤治疗方面的进展缓慢。然而，最近的研究增加了我们对创伤后脑损伤发展的了解。因此，现在有一个及时的机会来利用英国的研究优势来推进我们诊断和治疗方法的开发，从而实现更多针对个人的治疗路径。UK-TBI存储库和数据门户启用发现(TBI-Report)是由英国领先的研究人员和利益相关者组成的财团响应这一呼吁提出的建议。TBI-Report将建立一个平台，促进对TBI的全生命周期研究。我们团队的广度使我们能够解决所有伤害严重程度和各种伤害背景下的脑外伤致残和早期死亡问题，包括以前服务不足的群体，如现任和前任军事人员和运动员，以及那些暴露在亲密伴侣暴力之下的群体。为了实现这些目标，TBI-Report将建立一个英国国家研究平台，包括：1)一个数据中心，负责整理和整理大规模的TBI研究数据。我们将把这项工作与现有的基础设施相结合，与Dementias Platform UK(DPUK)和Heath Data Research UK(HDRUK)合作，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)和英国康复结果合作(UK ROC)。与DPUK的密切合作将允许无缝采用程序和协议，使研究人员能够首次简化对大型关联脑损伤数据集的访问，并通过国际脑损伤研究倡议(INTBIR)与国际合作伙伴进行访问。2)国家生物标记物资源将利用脑损伤和痴呆症研究的专业知识并连接到我们的数据中心，以：(I)协调大规模人类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，例如来自脑损伤危重患者脑压监测的透析液(脑微透析)；(Ii)协调和标准化脑成像数据收集和分析(计算机断层扫描、磁共振和正电子发射断层扫描)；(Iii)标准化专门组织库中尸检和手术组织样本的整理和存档。3)由NHS神经科学专科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，以支持对新的脑损伤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个医院地点-根据研究先进的脑成像、生物标记物和脑外伤治疗的潜力而选定。该网络将开发一个前瞻性的脑损伤患者的原则证明队列，在这些队列中，我们将收集大量的银行临床和生物数据，以证明该平台有能力提供具有挑战性的概念研究，这将发展和完善未来的脑损伤研究。脑损伤记者调查人员将通过一个计划指导委员会和顾问委员会成员，让他们现有的患者和公众代表网络参与进来，确保他们的利益--由强大的信息治理、伦理批准和计划管理支持--在平台开发的每个阶段都是至高无上的。

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.