Linking the ECRIN Metadata Repository with the BBMRI-ERIC Directory to connect clinical studies with related biobanks and collections

Abstract

Background There is much value to be gained by linking clinical studies and (biosample-) collections that have been generated in the context of a clinical study. However, the linking problem is hard because usually no direct references between a clinical study and an associated collection are available. Methods The BBMRI-ERIC Directory and the ECRIN Metadata Repository (MDR), already include much of the information required to link clinical studies and related sample collections. In this study, we present the work performed to find and implement those links across existing corresponding records in the two systems. The linking process between MDR studies and related collections in the BBMRI-ERIC Directory started with a two-stage linking process – one stage searching the BBMRI-ERIC Directory for candidate hits to try to link with MDR records, and a second stage searching the ECRIN MDR for candidate hits to try to link with Directory collections. Thereafter, a systematic search through the BBMRI-ERIC Directory was performed. Results The two-stage linking process resulted in a limited but promising number of linkages. The results of the systematic search of the Directory identified linkage of 202 studies, spanning 284 collections. Conclusions The analysis with existing data sources indicated that links between the BBMRI-ERIC and ECRIN collections exist, but also that they would be difficult to continuously identify and maintain without a great deal of manual work which neither organisation could support. The question arises whether, in the future, systems could be put into place to make the exchange of information and the linkage of identifiers almost automatic.