RD-Connect online catalogue of biobanks and registries: what do we add to the existing?

Gainotti, Sabina; Torreri, Paola; Elena Bravo,; Domenica Taruscio,; Muller, Heimo; Robert Rehis,; Peter Abuja,; Blandin, Gaelle; Estrella Lopez,; Manuel Posada,; Crimi, Marco; Monaco, Lucia

doi:10.6084/m9.figshare.939401.v1

RD-Connect Online Catalogue.pdf (308.32 kB)

RD-Connect online catalogue of biobanks and registries: what do we add to the existing?

poster

posted on 2014-02-20, 14:12 authored by Sabina GainottiSabina Gainotti, Paola Torreri, Elena Bravo, Domenica Taruscio, Heimo Muller, Robert Rehis, Peter Abuja, Gaelle Blandin, Estrella Lopez, Manuel Posada, Marco Crimi, Lucia Monaco

RD_Connect is a project aimed at increasing data sharing among registries, biobanks and bioinformatics. In this framework, we are developing an online catalogue of registries and biobanks which are relevant for research on rare diseases. As compared to existing inventories, the RD-Connect catalogue should offer more detailed information on the content of each database (N of samples/registered cases for a certain disease) and be regularly updated by an automatic alert system and through the active participation of biobanks/registries.

Also, the catalogue will promote networking interaction of its members.

The poster describes the main aims of the catalogue and the strategy used to invite biobanks and registries to be listed into the catalogue.