UKCRC Joint Funders Tissue Directory and Coordination Centre

目标和交付摘要我们协调中心的主要目标是通过提高英国世界级标本和队列收集的质量、可见性和可获得性，为学术和商业研究人员提供强有力的领导，实现英国对人类组织资源的愿景1。四个概念将构成我们愿景的基础：(1)确定目前在广泛的利益相关者和研究样本保管人之间建立最佳生物库的限制；(2)就这些问题的最佳解决方案达成共识；(3)通过信息学、协调和参与三个工作流程实施变化；(4)评估项目产出并确定未来需求。该项目将把伦敦大学学院和诺丁汉大学联合起来，提供一个世界级的环境，来自国际知名生物库的专家广泛参与。协调中心将设在伦敦大学学院负责卫生的副教务长办公室，由安妮·卡特领导，她在与生物库社区接触以提供协调和标准化战略方面有着良好的记录。这一战略定位将确保中心的主观性，将其嵌入到一个已经在处理诸如伦敦大学学院合作伙伴和伦敦大学学院生物资源等组织的多机构利益方面经验丰富的环境中。信息学开发和数据库将设在诺丁汉大学高级数据分析中心内。我们的伙伴关系将使世界领先的学术机构与协调国家生物库倡议、开发新的生物库IT系统以及领导公众/患者/利益相关者参与的专业知识相结合，正如附录I中的支持函所表明的那样。该项目还将汇集范围广泛和多样化的生物库和国际公认的信息学和‘组学’活动研究人员，例如，癌症生物库、眼库、牙库、儿童健康研究所和神经病学研究所的一系列生物库以及一系列健康和疾病方面的大型队列研究。我们的主要成果将是开发一个功能简单、可扩展的基于Web的强大信息平台。它将用于链接和传播关于信息学、协调和参与工作流的信息。成功将取决于有效参与的研究人员、生物样本收集、公众、监管机构和政策制定者，以便为英国建立一个商定的、统一的系统。生物库组织将受益于了解并积极参与开发泛英国系统，允许可靠地交换人类生物样本和相关的临床数据。研究人员将从提高可见度和获得适当的有质量保证的样本和数据中受益，同时资助者将避免支持不必要的生物资源。我们将提供一个适合国际生物库合作的生物库系统。

Summary of Aims and DeliveryThe main aim of our Coordination Centre is to provide strong leadership in realising the UKCRCFunders' Vision for Human Tissue Resources1, by increasing the quality, visibility and accessibility ofthe UK's world class specimen and cohort collections for academic and commercial researchers. Fourconcepts will form the foundation of our vision: (1) to identify the current limitation to optimalbiobanking amongst a wide range of stakeholders and custodians of research samples; (2) to reachconsensus on optimal solutions to those issues; (3) to implement the changes through three WorkStreams, informatics, harmonisation and engagement; (4) to evaluate project outputs and identifyfuture needs. The project will bring together UCL and University of Nottingham, to provide a worldclassenvironment with wide-ranging engagement of experts from internationally renownedbiobanks.The Coordination Centre will be based in the UCL Office of the Vice Provost for Health and will be ledby Anne Carter who has a strong track record of engaging with biobanking communities to deliverharmonisation and standardisation strategies. This strategic positioning will ensure the centre'sobjectivity by embedding it within an environment already experienced in dealing with multipleinstitutional interests across organisations such as UCL Partners and UCL Bioresource. Theinformatics development and database will be hosted within the University of Nottingham AdvancedData Analysis Centre. Our partnership will align an unrivalled combination of world leading academicinstitutions, with expertise in coordinating national biobanking initiatives, developing novelbiobanking IT systems, and leading public/patient/stakeholder engagement, as demonstrated by theletters of support in Appendix I. The project will also bring together a wide and diverse range ofbiobanks and internationally recognised researchers in informatics and 'omics' activities, forexample, cancer biobanks, eye banks, dental banks, a range of biobanks at the Institute of ChildHealth and Institute of Neurology and a collection of large cohort studies in healthy and diseasepopulations.Our main deliverable will be the development of a robust and scalable web based informaticsplatform with simple functionality, which will be used to link and disseminate information on theinformatics, harmonisation and engagement work streams. Success will depend on effectivelyengaging researchers, biosample collections, the public, regulators and policy makers, so as todevelop an agreed, unified system for the UK. Biobanking groups will benefit by understanding andbeing actively involved in developing a pan-UK system, allowing reliable exchange of humanbiospecimens and associated clinical data. Researchers will gain from increased visibility of, andease of access to appropriate quality assured samples and data, whilst funders will avoid supportingunnecessary bioresources. We will deliver a biobanking system appropriate for internationalbiobanking collaboration.