A Versatile,Secure,and Sustainable All-in-One Biobank-Registry Data Solution: The A3BC REDCap Model

Abstract

Introduction:

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 multisite biobank registry with complex longitudinal sample and data requirements.

Materials and Methods:

We assessed several international commercial and nonprofit software platforms using standardized system requirement criteria and follow-up interviews. Vendor compliance scoring was prioritized to meet our project-critical requirements. Consumer/end-user codesign was integral to refining our system requirements for optimized adoption. Customization of the selected software solution was performed to optimize field auto-population between participant timepoints and forms, using modules that are transferable and that do not impact core code. Institutional and independent testing was used to ensure data security.

Results:

We selected the widely used research web application Research Electronic Data Capture (REDCap), which is “free” (under nonprofit license agreement terms), highly configurable, and customizable 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: (1) best practice data security measures (incl. multisite access login using institutional user credentials), (2) permission-to-contact and dynamic itemized electronic consent, (3) a complete chain of custody from consent to longitudinal biospecimen data collection to publication, (4) complex longitudinal patient-reported surveys, (5) integration of record-level extracted/linked participant data, (6) significant form auto-population for streamlined data capture, and (7) native dashboards for operational visualizations.

Conclusion:

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.