The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases

Marina Mora, Corrado Angelini, Fabrizia Bignami, Anne Mary Bodin, Marco Crimi, Jeanne Hélène Di Donato, Alex Felice, Cécile Jaeger, V. Karcagi, Yann Lecam, Stephen Lynn, Marija Meznaric, Maurizio Moggio, Lucia Monaco, Luisa Politano, Manuel Posada De La Paz, Safaa Saker, Peter Schneiderat, Monica Ensini, Barbara GaravagliaDavid Gurwitz, Diana Johnson, Francesco Muntoni, Jack Puymirat, Mojgan Reza, Thomas Voit, Chiara Baldo, Franca Dagna Bricarelli, Stefano Goldwurm, Giuseppe Merla, Elena Pegoraro, Alessandra Renieri, Kurt Zatloukal, Mirella Filocamo, Hanns Lochmüller

Research output: Contribution to journalArticle

28 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)1116-1123
Number of pages8
JournalEuropean Journal of Human Genetics
Volume23
Issue number9
DOIs
Publication statusPublished - Sep 14 2015

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Rare Diseases
Registries
International Cooperation
Professional Practice
Computational Biology
Practice Guidelines
Research
Running
Quality Control
DNA
Growth

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics

Cite this

Mora, M., Angelini, C., Bignami, F., Bodin, A. M., Crimi, M., Di Donato, J. H., ... Lochmüller, H. (2015). The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases. European Journal of Human Genetics, 23(9), 1116-1123. https://doi.org/10.1038/ejhg.2014.272

The EuroBioBank Network : 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases. / Mora, Marina; Angelini, Corrado; Bignami, Fabrizia; Bodin, Anne Mary; Crimi, Marco; Di Donato, Jeanne Hélène; Felice, Alex; Jaeger, Cécile; Karcagi, V.; Lecam, Yann; Lynn, Stephen; Meznaric, Marija; Moggio, Maurizio; Monaco, Lucia; Politano, Luisa; De La Paz, Manuel Posada; 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; Pegoraro, Elena; Renieri, Alessandra; Zatloukal, Kurt; Filocamo, Mirella; Lochmüller, Hanns.

In: European Journal of Human Genetics, Vol. 23, No. 9, 14.09.2015, p. 1116-1123.

Research output: Contribution to journalArticle

Mora, M, Angelini, C, Bignami, F, Bodin, AM, Crimi, M, Di Donato, JH, Felice, A, Jaeger, C, Karcagi, V, Lecam, Y, Lynn, S, Meznaric, M, Moggio, M, Monaco, L, Politano, L, De La Paz, MP, Saker, S, Schneiderat, P, Ensini, M, Garavaglia, B, Gurwitz, D, Johnson, D, Muntoni, F, Puymirat, J, Reza, M, Voit, T, Baldo, C, Bricarelli, FD, Goldwurm, S, Merla, G, Pegoraro, E, Renieri, A, Zatloukal, K, Filocamo, M & Lochmüller, H 2015, 'The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases', European Journal of Human Genetics, vol. 23, no. 9, pp. 1116-1123. https://doi.org/10.1038/ejhg.2014.272
Mora, Marina ; Angelini, Corrado ; Bignami, Fabrizia ; Bodin, Anne Mary ; Crimi, Marco ; Di Donato, Jeanne Hélène ; Felice, Alex ; Jaeger, Cécile ; Karcagi, V. ; Lecam, Yann ; Lynn, Stephen ; Meznaric, Marija ; Moggio, Maurizio ; Monaco, Lucia ; Politano, Luisa ; De La Paz, Manuel Posada ; 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 ; Pegoraro, Elena ; Renieri, Alessandra ; Zatloukal, Kurt ; Filocamo, Mirella ; Lochmüller, Hanns. / The EuroBioBank Network : 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases. In: European Journal of Human Genetics. 2015 ; Vol. 23, No. 9. pp. 1116-1123.
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