UKCRC Joint Funders Tissue Directory and Coordination Centre

目标和交付摘要我们的协调中心的主要目标是提供强有力的领导，实现UKCRCFunders的人类组织资源的愿景1，通过提高英国世界级标本和队列收集的质量，知名度和可访问性，为学术和商业研究人员。四个概念将构成我们愿景的基础：（1）在广泛的利益相关者和研究样本保管人中确定当前对最佳生物库的限制;（2）就这些问题的最佳解决方案达成共识;（3）通过三个工作流程，信息学，协调和参与实施变革;（4）评估项目产出并确定未来需求。该项目将汇集伦敦大学学院和诺丁汉大学，为来自国际知名生物库的专家提供一个世界级的环境。协调中心将设在伦敦大学学院卫生副教务长办公室，并将由安妮卡特领导，她在与生物库社区合作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目标性，将其嵌入一个环境中，这个环境已经在处理跨组织（如UCL Partners和UCL Bioresource）的多机构利益方面有过经验。信息学开发和数据库将托管在诺丁汉大学高级数据分析中心。我们的合作伙伴关系将使世界领先的学术机构的无与伦比的组合保持一致，这些机构在协调国家生物库计划，开发新型生物库IT系统以及领导公众/患者/利益相关者参与方面具有专业知识，如附录I中的支持信所示。该项目还将汇集广泛和多样化的生物库和国际公认的研究人员在信息学和“组学”活动，例如，癌症生物库，眼库，牙科银行，一系列的生物库在儿童健康研究所和神经学研究所和一系列的大型队列研究的健康和疾病人群。我们的主要交付将是一个强大的和可扩展的网络为基础的发展信息学平台具有简单的功能，将用于链接和传播有关信息学、协调和参与工作流程的信息。成功将取决于有效地吸引研究人员、生物样本收集者、公众、监管机构和政策制定者，以便为英国开发一个商定的统一系统。生物库组织将通过理解和积极参与开发泛英国系统而受益，该系统允许可靠地交换人体生物标本和相关临床数据。研究人员将从增加的可见度中获益，并更容易获得适当的质量保证的样本和数据，而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.