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

TBI-REPORTER（UK-TBI 存储库和数据门户支持发现）

• 批准号: MR/Y008502/1
• 负责人: David Menon
• 金额: $ 1217.93万
• 依托单位: University of Cambridge
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2023
• 资助国家: 英国
• 起止时间: 2023 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=MR%2FY008502%2F1
• 关键词: TBI; REPORTER; UK; REpository; data

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.

创伤性脑损伤（TBI）是死亡和残疾的主要原因，每年给英国经济造成的损失超过100亿英镑，每年给全球经济造成的损失超过4000亿美元。此外，TBI影响幸存者的终身健康（增加痴呆症，癫痫和精神健康状况不佳的风险，并缩短预期寿命）。尽管实验室数据很有希望，但已经有多个失败和昂贵的药物试验，改善TBI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，有一个及时的机会，利用英国的研究优势，以推进我们的诊断和治疗方法的发展，使更多的人特定的治疗pathways.UK-TBI REpository和数据PORTal使能discoveRy（TBI-REPORTER），是一个由英国领先的研究人员和利益相关者联盟响应这一呼吁的建议。TBI-REPORTER将建立一个平台，以促进TBI在整个生命周期中的研究。我们团队的广度使我们能够解决所有伤害严重程度和完整范围的伤害环境中TBI的残疾和早期死亡率，包括以前服务不足的群体，如现任和前任军人和运动员，以及那些暴露于亲密伴侣暴力的人。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）数据中心，以大规模整理和管理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，将这一努力与现有的基础设施相结合，以建立与现有英国NHS TBI数据集的联系，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-简化访问大型链接TBI数据集，并通过国际TBI研究倡议（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，并链接到我们的数据中心：（i）统筹大规模收集和行程人类血液及其他样品，包括透过先进技术取得的样品，例如从严重创伤性脑损伤病人的脑压监测所得的透析液（脑微透析）;（ii）统筹及协调脑成像数据的收集及分析工作（计算机断层扫描、磁共振和正电子发射断层扫描）;（iii）在专业组织库中对死后和手术组织样本进行标准化整理和存档。3）由研究就绪的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，以支持对新型TBI诊断和治疗方法的研究。这些中心最初将包括6个开拓者中心，但最终将扩大到12-16个医院地点-根据研究先进的脑成像，生物标志物和TBI治疗的潜力进行选择。该网络将为TBI患者开发一个前瞻性的原理验证队列，我们将收集大量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，这些研究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资格，在平台开发的每个阶段，确保他们的利益-得到强有力的信息治理、道德审批和方案管理的支持-是至关重要的。