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Eur J Hum Genet. 2015 Sep;23(9):1116-23. doi: 10.1038/ejhg.2014.272. Epub 2014 Dec 24.

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

Author information

  • 1Muscle Cell Biology Lab, Neuromuscular Diseases and Neuroimmunolgy Unit, Fondazione Istituto Neurologico C. Besta, Milano, Italy.
  • 21] IRCCS Fondazione San Camillo Hospital, Lido Venice, Italy [2] Department of Neurosciences, NPSRR University of Padova, Padova, Italy.
  • 3GlaxoSmithKline, London, UK.
  • 4EURORDIS, European Organisation for Rare Diseases, Paris, France.
  • 5Fondazione Telethon, Milan, Italy.
  • 63 C-R, Castelginest, France.
  • 7Laboratory of Molecular Genetics and Malta BioBank, University of Malta, and Thalassaemia Clinic, Mater Dei Hospital, Msida, Malta.
  • 8Hôpital Foch, Suresnes, France.
  • 9Department of Molecular Genetics and Diagnostics, National Institute of Environmental Health, Budapest, Hungary.
  • 10MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine, Newcastle University, International Centre for Life, Newcastle upon Tyne, UK.
  • 11Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia.
  • 12Neuromuscular Unit, IRCCS Foundation Ca' Granda Ospedale Maggiore Policlinico, Dino Ferrari Centre, University of Milan, Milan, Italy.
  • 13Division of Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples, Naples, Italy.
  • 14Manuel Posada de la Paz, Institute of Rare Diseases Research, IIER, ISCIII and Spain RDR & CIBERER, Madrid, Spain.
  • 15GENETHON, DNA and Cell Bank, Evry, France.
  • 16Muscle Tissue Culture Collection, Friedrich-Baur-Institute, Neurological Department, Ludwig-Maximilians-University of Munich, Munich, Germany.
  • 17Molecular Neurogenetics Unit, Fondazione Istituto Neurologico C. Besta, Milano, Italy.
  • 18Department of Human Molecular Genetics and Biochemistry, Sackler Faculty of Medicine, Tel-Aviv University, Tel-Aviv, Israel.
  • 19Dubowitz Neuromuscular Centre, MRC Neuromuscular Centre at UCL Institute of Child Health, London, UK.
  • 20Department of Human Genetics, Centre Hospitalier Universitaire de Quebec, Quebec City, Quebec, Canada.
  • 21Inserm U974-Institute of Myology, University Pierre and Marie Curie Paris 6, Paris, France.
  • 22Laboratorio di Genetica Umana, E.O. Ospedali Galliera, Genova, Italy.
  • 23Dipartimento Ligure di Genetica, E.O. Ospedali Galliera, Genova, Italy.
  • 24Parkinson Institute, Istituti Clinici di Perfezionamento, Milano, Italy.
  • 25Medical Genetics Unit, IRCCS Casa Sollievo della Sofferenza Hospital, San Giovanni Rotondo, Italy.
  • 26Department of Neurosciences, NPSRR University of Padova, Padova, Italy.
  • 27Division of Medical Genetics, University of Siena, Azienda Ospedaliera Universitaria Senese, Siena, Italy.
  • 28Institute of Pathology, Medical University of Graz, Graz, Austria.
  • 29Centro di Diagnostica Genetica e Biochimica delle Malattie Metaboliche, Istituto G. Gaslini, Genova, Italy.

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.

PMID:
25537360
[PubMed - indexed for MEDLINE]
PMCID:
PMC4538193
Free PMC Article
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