UKCRC Joint Funders Tissue Directory and Coordination Centre

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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.