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A key element in the big data revolution is large-scale biobanking and the associated development of high-quality data collections and supporting informatics solutions. As such, in establishing the Australian Arthritis and Autoimmune Biobank Collaborative (A3BC), we sought to establish a low-cost, nation-scale data management system capable of managing a multi-site biobank-registry with complex longitudinal sample and data requirements.
We assessed several international commercial and non-profit software platforms using standardised system requirement criteria and follow-up interviews. Vendor compliance scoring was prioritised to meet our project-critical requirements. Consumer / end-user co-design was integral to refining our system requirements for optimised adoption. Customisation of the selected software solution was performed to optimise field auto-population between participant timepoints and forms, using modules that are transferable and do not impact core code. Institutional and independent testing was used to ensure data security.
We selected the widely used research web application Research Electronic Data Capture (REDCap) which is “free” (under non-profit license agreement terms), highly configurable and customisable to a variety of biobank and registry needs, and can be developed/ maintained by biobank users with modest IT skill, time and cost. We created a secure, comprehensive participant-centric biobank-registry database that includes: (a) best practice data security measures (incl. multi-site access login using institutional user credentials), (b) permission-to-contact and dynamic itemised e-consent, (c) a complete chain of custody from consent to longitudinal biospecimen-data collection to publication, (d) complex longitudinal patient-reported surveys, (e) integration of record-level extracted/ linked participant data, (f) significant form auto-population for streamlined data capture, and (g) native dashboards for operational visualisations.
We recommend the versatile, reusable and sustainable informatics model we have developed in REDCap for prospective chronic disease biobanks or registry-biobanks (of local to national complexity) supporting holistic research into disease prediction, precision medicine and prevention strategies.