Informatics Vision for NBN Pilot
For the IPBS and NBN pilot, it is tempting to consider building a single centralized database or a standard system for all centers to use; however, most teams have built systems around their organizational cultures, and radical changes to existing systems or rollout of standardized systems to replace custom programs would likely fail. A more practical and logical approach involves the development of an interoperability layer among the 11 Prostate Cancer SPOREs as shown in Figure 1.
Figure 1 . Prostate SPORE NBN Pilot Overview
Figure 1 illustrates the vision for the informatics system of the NBN Pilot. Each prostate cancer SPORE site currently maintains several site-specific database modules (see Information Systems at Each Site), including clinical data modules; protocol tracking and biospecimen tracking modules; and analysis tools and results bank modules. The prostate cancer SPOREs will work together to standardize the input into these site-specific modules as much as possible by using common Institutional Review Board (IRB) protocols, consent forms, and specimen collection and processing procedures. However, where complete standardization is impossible, specimens will be annotated with detailed information about specific informed-consent elements, and specimen collection and processing procedures employed.
Several steps will be involved to transfer and share information from the site-specific database modules to the proposed interoperability layer. All personally identifiable information will be removed from biospecimens, data will be submitted using common data elements, and specimens will be transferred with common material transfer agreements. As shown in Figure 1B, the resources and data transferred to the interoperability layer will be organized and tracked in four modules: a searchable Web catalog; protocol tracking and biospecimen tracking modules, and a common results bank. The development of this interoperability layer will help improve information and resource sharing among the 11 prostate cancer SPORE programs.
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