title: The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases.
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.
authors.affiliation: Muscle Cell Biology Lab, Neuromuscular Diseases and Neuroimmunolgy Unit, Fondazione Istituto Neurologico C. Besta, Milano, Italy.
authors.forename: Marina
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authors.lastname: Mora
authors.affiliation: 1] IRCCS Fondazione San Camillo Hospital, Lido Venice, Italy [2] Department of Neurosciences, NPSRR University of Padova, Padova, Italy.
authors.forename: Corrado
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authors.lastname: Angelini
authors.affiliation: GlaxoSmithKline, London, UK.
authors.forename: Fabrizia
authors.initials: F
authors.lastname: Bignami
authors.affiliation: EURORDIS, European Organisation for Rare Diseases, Paris, France.
authors.forename: Anne-Mary
authors.initials: AM
authors.lastname: Bodin
authors.affiliation: Fondazione Telethon, Milan, Italy.
authors.forename: Marco
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authors.lastname: Crimi
authors.affiliation: 3 C-R, Castelginest, France.
authors.forename: Jeanne-Hélène
authors.initials: JH
authors.lastname: Di Donato
authors.affiliation: Laboratory of Molecular Genetics and Malta BioBank, University of Malta, and Thalassaemia Clinic, Mater Dei Hospital, Msida, Malta.
authors.forename: Alex
authors.initials: A
authors.lastname: Felice
authors.affiliation: Hôpital Foch, Suresnes, France.
authors.forename: Cécile
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authors.lastname: Jaeger
authors.affiliation: Department of Molecular Genetics and Diagnostics, National Institute of Environmental Health, Budapest, Hungary.
authors.forename: Veronika
authors.initials: V
authors.lastname: Karcagi
authors.affiliation: EURORDIS, European Organisation for Rare Diseases, Paris, France.
authors.forename: Yann
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authors.lastname: LeCam
authors.affiliation: MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine, Newcastle University, International Centre for Life, Newcastle upon Tyne, UK.
authors.forename: Stephen
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authors.lastname: Lynn
authors.affiliation: Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia.
authors.forename: Marija
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authors.lastname: Meznaric
authors.affiliation: Neuromuscular Unit, IRCCS Foundation Ca' Granda Ospedale Maggiore Policlinico, Dino Ferrari Centre, University of Milan, Milan, Italy.
authors.forename: Maurizio
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authors.lastname: Moggio
authors.affiliation: Fondazione Telethon, Milan, Italy.
authors.forename: Lucia
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authors.affiliation: Division of Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples, Naples, Italy.
authors.forename: Luisa
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authors.affiliation: Manuel Posada de la Paz, Institute of Rare Diseases Research, IIER, ISCIII and Spain RDR & CIBERER, Madrid, Spain.
authors.forename: Manuel Posada
authors.initials: MP
authors.lastname: de la Paz
authors.affiliation: GENETHON, DNA and Cell Bank, Evry, France.
authors.forename: Safaa
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authors.lastname: Saker
authors.affiliation: Muscle Tissue Culture Collection, Friedrich-Baur-Institute, Neurological Department, Ludwig-Maximilians-University of Munich, Munich, Germany.
authors.forename: Peter
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authors.lastname: Schneiderat
authors.affiliation: MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine, Newcastle University, International Centre for Life, Newcastle upon Tyne, UK.
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authors.lastname: Ensini
authors.affiliation: Molecular Neurogenetics Unit, Fondazione Istituto Neurologico C. Besta, Milano, Italy.
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authors.lastname: Garavaglia
authors.affiliation: Department of Human Molecular Genetics and Biochemistry, Sackler Faculty of Medicine, Tel-Aviv University, Tel-Aviv, Israel.
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authors.affiliation: Dubowitz Neuromuscular Centre, MRC Neuromuscular Centre at UCL Institute of Child Health, London, UK.
authors.forename: Diana
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authors.lastname: Johnson
authors.affiliation: Dubowitz Neuromuscular Centre, MRC Neuromuscular Centre at UCL Institute of Child Health, London, UK.
authors.forename: Francesco
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authors.lastname: Muntoni
authors.affiliation: Department of Human Genetics, Centre Hospitalier Universitaire de Quebec, Quebec City, Quebec, Canada.
authors.forename: Jack
authors.initials: J
authors.lastname: Puymirat
authors.affiliation: MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine, Newcastle University, International Centre for Life, Newcastle upon Tyne, UK.
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authors.affiliation: Inserm U974-Institute of Myology, University Pierre and Marie Curie Paris 6, Paris, France.
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authors.affiliation: Laboratorio di Genetica Umana, E.O. Ospedali Galliera, Genova, Italy.
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authors.forename: Franca Dagna
authors.initials: FD
authors.lastname: Bricarelli
authors.affiliation: Parkinson Institute, Istituti Clinici di Perfezionamento, Milano, Italy.
authors.forename: Stefano
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authors.lastname: Goldwurm
authors.affiliation: Medical Genetics Unit, IRCCS Casa Sollievo della Sofferenza Hospital, San Giovanni Rotondo, Italy.
authors.forename: Giuseppe
authors.identifier: 000000015078928X
authors.initials: G
authors.lastname: Merla
authors.affiliation: Department of Neurosciences, NPSRR University of Padova, Padova, Italy.
authors.forename: Elena
authors.initials: E
authors.lastname: Pegoraro
authors.affiliation: Division of Medical Genetics, University of Siena, Azienda Ospedaliera Universitaria Senese, Siena, Italy.
authors.forename: Alessandra
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authors.affiliation: Institute of Pathology, Medical University of Graz, Graz, Austria.
authors.forename: Kurt
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authors.affiliation: Centro di Diagnostica Genetica e Biochimica delle Malattie Metaboliche, Istituto G. Gaslini, Genova, Italy.
authors.forename: Mirella
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authors.lastname: Filocamo
authors.affiliation: MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine, Newcastle University, International Centre for Life, Newcastle upon Tyne, UK.
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authors.lastname: Lochmüller
mesh_terms: D018070:Biological Specimen Banks / Q000458:organization & administration*; D019295:Computational Biology; D005060:Europe; D006801:Humans; D007391:International Cooperation; D011786:Quality Control; D035583:Rare Diseases / Q000175:diagnosis / Q000235:genetics* / Q000473:pathology / Q000628:therapy; D012042:Registries