title: The Informatics Challenges Facing Biobanks: A Perspective from a United Kingdom Biobanking Network.
abstract: The challenges facing biobanks are changing from simple collections of materials to quality-assured fit-for-purpose clinically annotated samples. As a result, informatics awareness and capabilities of a biobank are now intrinsically related to quality. A biobank may be considered a data repository, in the form of raw data (the unprocessed samples), data surrounding the samples (processing and storage conditions), supplementary data (such as clinical annotations), and an increasing ethical requirement for biobanks to have a mechanism for researchers to return their data. The informatics capabilities of a biobank are no longer simply knowing sample locations; instead the capabilities will become a distinguishing factor in the ability of a biobank to provide appropriate samples. There is an increasing requirement for biobanking systems (whether in-house or commercially sourced) to ensure the informatics systems stay apace with the changes being experienced by the biobanking community. In turn, there is a requirement for the biobanks to have a clear informatics policy and directive that is embedded into the wider decision making process. As an example, the Breast Cancer Campaign Tissue Bank in the UK was a collaboration between four individual and diverse biobanks in the UK, and an informatics platform has been developed to address the challenges of running a distributed network. From developing such a system there are key observations about what can or cannot be achieved by informatics in isolation. This article will highlight some of the lessons learned during this development process.
authors.affiliation: 1 Dundee Cancer Centre, Ninewells Hospital and Medical School , Dundee, United Kingdom .|2 School of Veterinary Medicine and Science, University of Nottingham , Leicestershire, United Kingdom .|3 Computer Science, University of Nottingham , Leicestershire, United Kingdom .|4 Advanced Data Analysis Centre, University of Nottingham , Leicestershire, United Kingdom .
authors.forename: Philip R
authors.initials: PR
authors.lastname: Quinlan
authors.affiliation: 1 Dundee Cancer Centre, Ninewells Hospital and Medical School , Dundee, United Kingdom .
authors.forename: Martin
authors.initials: M
authors.lastname: Groves
authors.affiliation: 5 NHS Tayside, Ninewells Hospital and Medical School , Dundee, United Kingdom .
authors.forename: Lee B
authors.initials: LB
authors.lastname: Jordan
authors.affiliation: 6 Independent Cancer Patients Voice , London, United Kingdom .
authors.forename: Hilary
authors.initials: H
authors.lastname: Stobart
authors.affiliation: 5 NHS Tayside, Ninewells Hospital and Medical School , Dundee, United Kingdom .
authors.forename: Colin A
authors.initials: CA
authors.lastname: Purdie
authors.affiliation: 1 Dundee Cancer Centre, Ninewells Hospital and Medical School , Dundee, United Kingdom .|7 Department of Surgical Oncology, MD Anderson Cancer Centre , Houston, Texas.
authors.forename: Alastair M
authors.initials: AM
authors.lastname: Thompson
mesh_terms: D018070:Biological Specimen Banks; D035843:Biomedical Research; D006801:Humans; D048088:Informatics; D006113:United Kingdom; D014584:User-Computer Interface