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Table 1 Summary of fundamental research and infrastructural needs of OVCARE’s research community

From: From biobank and data silos into a data commons: convergence to support translational medicine

  Fundamental research requirements
1 Generate efficiencies in data collection, storage and analysis to maximize utility of collected data
2 Limit errors in data handling and ensure reproducibility of research findings
3 Protect patients’ privacy and honor their consent
4 Optimize secondary and continuous use of data generated from research and clinical care
5 Facilitate the recruitment of patients in various clinical studies
6 Identify specimen from patients with specific clinical, molecular and genomic characteristics
7 Integration of medical and clinical data with molecular information to enable the discovery and testing of new associations and hypotheses towards translational research
8 Organize data towards a learning healthcare system where translation is bi-directional: Evidence-based research is used to inform practice, and the data generated during clinical care is in turn used to inform guidelines, generate hypotheses and trigger pragmatic trials
  Functional and infrastructural IT requirements
1 Allow batch data imports and exports
2 Facilitate validation of data entered to minimize errors (e.g. returning an error message when text is entered instead of a numeric value)
3 Easy-to-use and customizable user interfaces
4 Support both prospective and retrospective data collection mechanisms
5 Adapt to changing needs between studies and projects, as well as over time
6 Track biospecimen locations, usage and shipment to both local and offsite storage locations
7 Support multi-tenancy for the banking of biospecimens from distributed and diverse studies lead by different investigators interested in sharing resources
8 Adherence to best practices in privacy and security, such as, support for data encryption, audit trails on all user actions and data changes for regulatory compliance, configurable user privileges, role-based access control and adherence to federal regulations with respect to deidentification of specimen and tracking of consent
9 Support interoperability and integration with other institutions, systems, and data sources to facilitate data sharing
10 Potential to scale-up biospecimen and user capacity at no added cost
11 Stable and mature vendor and community support