Access to data and sample collections

This subproject aims to make the disparately stored collections of biomedical samples (e.g. tissue, blood, urine) and data sets (e.g. experimental, clinical and population survey data) findable to investigators across the country via a shared catalogue and facilitate request workflows. The registries of UMC biobanks, BBMRI-NL, LifeLines (a large-scale genetic study into the mechanisms behind healthy aging), PSI, TralT and PALGA (a nationwide network and registry of histopathology and cytopathology in the Netherlands) will be connected via automated web-service connections to allow a search of samples and data at a national level. This program line also takes care of the necessary prerequisites for such a national catalogue, such as harmonisation of procedures for providing data and samples and proper assurance of privacy protection and informed consent. We will build on the international minimum information standard about biobank information, MIABIS, and the open source MOLGENIS software that is currently used for many national and EU catalogues.

Coordination: UMCG and BBMRI-NL: national catalogue and request workflow working group, supplemented by contributions from European projects like BBMRI-ERIC common services for IT, CORBEL and RD-connect.

Morris Swertz explained why it is so important to catalogue biomaterials and data in the interview "Access to data and sample collections: reaping what we have sown" published in newsletter #2 (Nov 18, 2016). With around 200 biobanks, the Netherlands is a frontrunner in collecting large data and sample sets from population and patient cohorts. “Unfortunately, the actual use of this valuable material lags behind,” says Dr Morris Swertz. WP3 thus aims to make it easier for researchers to use biomaterials and data collected by others.