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Title: | The EuroBioBank Network : ten years of hands-on experience of collaborative, transnational biobanking for rare diseases |
Authors: | Mora, Marina Angelini, Corrado Bignami, Fabrizia Bodin, Anne-Mary Crimi, Marco Di Donato, Jeanne-Helene Felice, Alex Jaeger, Cecile Karcagi, Veronika LeCam, Yann Lynn, Stephen Meznaric, Marija Moggio, Maurizio Monaco, Lucia Politano, Luisa Posada De La Paz, Manuel Saker, Safaa Schneiderat, Peter Ensini, Monica Garavaglia, Barbara Gurwitz, David Johnson, Diana Muntoni, Francesco Puymirat, Jack Reza, Mojgan Voit, Thomas Baldo, Chiara Bricarelli, Franca Dagna Goldwurm, Stefano Merla, Giuseppe Renieri, Alessandro Zatloukal, Kurt Filocamo, Mirella Lochmuller, Hanns Pegoraro, Elena |
Keywords: | Biobanks -- Europe Biological specimens -- Europe Rare diseases |
Issue Date: | 2015 |
Publisher: | Nature Publishing Group |
Citation: | Mora, M., Angelini, C., Bignami, F., Bodin, A. M., Crimi, M., Di Donato, J. H.,...Lochmuller, H. (2015). The EuroBioBank Network: ten years of hands-on experience of collaborative, transnational biobanking for rare diseases. European Journal of Human Genetics, 23(9), 1116-1123. |
Abstract: | The EuroBioBank (EBB) network (www.eurobiobank.org) is the first operating network of biobanks in Europe to provide human DNA, cell and tissue samples as a service to the scientific community conducting research on rare diseases (RDs). The EBB was established in 2001 to facilitate access to RD biospecimens and associated data; it obtained funding from the European Commission in 2002 (5th framework programme) and started operation in 2003. The set-up phase, during the EC funding period 2003–2006, established the basis for running the network; the following consolidation phase has seen the growth of the network through the joining of new partners, better network cohesion, improved coordination of activities, and the development of a quality-control system. During this phase the network participated in the EC-funded TREAT-NMD programme and was involved in planning of the European Biobanking and Biomolecular Resources Research Infrastructure. Recently, EBB became a partner of RD-Connect, an FP7 EU programme aimed at linking RD biobanks, registries, and bioinformatics data. Within RD-Connect, EBB contributes expertise, promotes high professional standards, and best practices in RD biobanking, is implementing integration with RD patient registries and ‘omics’ data, thus challenging the fragmentation of international cooperation on the field. |
URI: | https://www.um.edu.mt/library/oar//handle/123456789/28920 |
Appears in Collections: | Scholarly Works - FacM&SPB |
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The_EuroBioBank_Network_ten_years_of_hands-on_experience_of_collaborative_2015.pdf | 2.25 MB | Adobe PDF | View/Open |
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