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

Identifieur interne : 000048 ( France/Analysis ); précédent : 000047; suivant : 000049

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

Auteurs : Marina Mora [Italie] ; Corrado Angelini [Italie] ; Fabrizia Bignami [Royaume-Uni] ; Anne-Mary Bodin [France] ; Marco Crimi [Italie] ; Jeanne-Hélène Di Donato [France] ; Alex Felice [Malte] ; Cécile Jaeger [France] ; Veronika Karcagi [Hongrie] ; Yann Lecam [France] ; Stephen Lynn [Royaume-Uni] ; Marija Meznaric [Slovénie] ; Maurizio Moggio [Italie] ; Lucia Monaco [Italie] ; Luisa Politano [Italie] ; Manuel Posada De La Paz [Espagne] ; Safaa Saker [France] ; Peter Schneiderat [Allemagne] ; Monica Ensini [Royaume-Uni] ; Barbara Garavaglia [Italie] ; David Gurwitz [Israël] ; Diana Johnson [Royaume-Uni] ; Francesco Muntoni [Royaume-Uni] ; Jack Puymirat [Canada] ; Mojgan Reza [Royaume-Uni] ; Thomas Voit [France] ; Chiara Baldo [Italie] ; Franca Dagna Bricarelli [Italie] ; Stefano Goldwurm [Italie] ; Giuseppe Merla [Italie] ; Elena Pegoraro [Italie] ; Alessandra Renieri [Italie] ; Kurt Zatloukal [Autriche] ; Mirella Filocamo [Italie] ; Hanns Lochmüller [Royaume-Uni]

Source :

RBID : pubmed:25537360

English descriptors

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.

DOI: 10.1038/ejhg.2014.272
PubMed: 25537360


Affiliations:


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pubmed:25537360

Le document en format XML

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<term>Biological Specimen Banks</term>
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<keywords scheme="MESH" qualifier="pathology" xml:lang="en">
<term>Rare Diseases</term>
</keywords>
<keywords scheme="MESH" qualifier="therapy" xml:lang="en">
<term>Rare Diseases</term>
</keywords>
<keywords scheme="MESH" xml:lang="en">
<term>Computational Biology</term>
<term>Humans</term>
<term>International Cooperation</term>
<term>Quality Control</term>
<term>Registries</term>
</keywords>
</textClass>
</profileDesc>
</teiHeader>
<front>
<div type="abstract" xml:lang="en">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.</div>
</front>
</TEI>
<affiliations>
<list>
<country>
<li>Allemagne</li>
<li>Autriche</li>
<li>Canada</li>
<li>Espagne</li>
<li>France</li>
<li>Hongrie</li>
<li>Israël</li>
<li>Italie</li>
<li>Malte</li>
<li>Royaume-Uni</li>
<li>Slovénie</li>
</country>
<region>
<li>Angleterre</li>
<li>Bavière</li>
<li>Communauté de Madrid</li>
<li>District de Haute-Bavière</li>
<li>Grand Londres</li>
<li>Hongrie centrale</li>
<li>Lombardie</li>
<li>Île-de-France</li>
</region>
<settlement>
<li>Budapest</li>
<li>Londres</li>
<li>Madrid</li>
<li>Milan</li>
<li>Munich</li>
<li>Paris</li>
<li>Évry (Essonne)</li>
</settlement>
<orgName>
<li>Université Louis-et-Maximilien de Munich</li>
</orgName>
</list>
<tree>
<country name="Italie">
<noRegion>
<name sortKey="Mora, Marina" sort="Mora, Marina" uniqKey="Mora M" first="Marina" last="Mora">Marina Mora</name>
</noRegion>
<name sortKey="Angelini, Corrado" sort="Angelini, Corrado" uniqKey="Angelini C" first="Corrado" last="Angelini">Corrado Angelini</name>
<name sortKey="Baldo, Chiara" sort="Baldo, Chiara" uniqKey="Baldo C" first="Chiara" last="Baldo">Chiara Baldo</name>
<name sortKey="Bricarelli, Franca Dagna" sort="Bricarelli, Franca Dagna" uniqKey="Bricarelli F" first="Franca Dagna" last="Bricarelli">Franca Dagna Bricarelli</name>
<name sortKey="Crimi, Marco" sort="Crimi, Marco" uniqKey="Crimi M" first="Marco" last="Crimi">Marco Crimi</name>
<name sortKey="Filocamo, Mirella" sort="Filocamo, Mirella" uniqKey="Filocamo M" first="Mirella" last="Filocamo">Mirella Filocamo</name>
<name sortKey="Garavaglia, Barbara" sort="Garavaglia, Barbara" uniqKey="Garavaglia B" first="Barbara" last="Garavaglia">Barbara Garavaglia</name>
<name sortKey="Goldwurm, Stefano" sort="Goldwurm, Stefano" uniqKey="Goldwurm S" first="Stefano" last="Goldwurm">Stefano Goldwurm</name>
<name sortKey="Merla, Giuseppe" sort="Merla, Giuseppe" uniqKey="Merla G" first="Giuseppe" last="Merla">Giuseppe Merla</name>
<name sortKey="Moggio, Maurizio" sort="Moggio, Maurizio" uniqKey="Moggio M" first="Maurizio" last="Moggio">Maurizio Moggio</name>
<name sortKey="Monaco, Lucia" sort="Monaco, Lucia" uniqKey="Monaco L" first="Lucia" last="Monaco">Lucia Monaco</name>
<name sortKey="Pegoraro, Elena" sort="Pegoraro, Elena" uniqKey="Pegoraro E" first="Elena" last="Pegoraro">Elena Pegoraro</name>
<name sortKey="Politano, Luisa" sort="Politano, Luisa" uniqKey="Politano L" first="Luisa" last="Politano">Luisa Politano</name>
<name sortKey="Renieri, Alessandra" sort="Renieri, Alessandra" uniqKey="Renieri A" first="Alessandra" last="Renieri">Alessandra Renieri</name>
</country>
<country name="Royaume-Uni">
<region name="Angleterre">
<name sortKey="Bignami, Fabrizia" sort="Bignami, Fabrizia" uniqKey="Bignami F" first="Fabrizia" last="Bignami">Fabrizia Bignami</name>
</region>
<name sortKey="Ensini, Monica" sort="Ensini, Monica" uniqKey="Ensini M" first="Monica" last="Ensini">Monica Ensini</name>
<name sortKey="Johnson, Diana" sort="Johnson, Diana" uniqKey="Johnson D" first="Diana" last="Johnson">Diana Johnson</name>
<name sortKey="Lochmuller, Hanns" sort="Lochmuller, Hanns" uniqKey="Lochmuller H" first="Hanns" last="Lochmüller">Hanns Lochmüller</name>
<name sortKey="Lynn, Stephen" sort="Lynn, Stephen" uniqKey="Lynn S" first="Stephen" last="Lynn">Stephen Lynn</name>
<name sortKey="Muntoni, Francesco" sort="Muntoni, Francesco" uniqKey="Muntoni F" first="Francesco" last="Muntoni">Francesco Muntoni</name>
<name sortKey="Reza, Mojgan" sort="Reza, Mojgan" uniqKey="Reza M" first="Mojgan" last="Reza">Mojgan Reza</name>
</country>
<country name="France">
<region name="Île-de-France">
<name sortKey="Bodin, Anne Mary" sort="Bodin, Anne Mary" uniqKey="Bodin A" first="Anne-Mary" last="Bodin">Anne-Mary Bodin</name>
</region>
<name sortKey="Di Donato, Jeanne Helene" sort="Di Donato, Jeanne Helene" uniqKey="Di Donato J" first="Jeanne-Hélène" last="Di Donato">Jeanne-Hélène Di Donato</name>
<name sortKey="Jaeger, Cecile" sort="Jaeger, Cecile" uniqKey="Jaeger C" first="Cécile" last="Jaeger">Cécile Jaeger</name>
<name sortKey="Lecam, Yann" sort="Lecam, Yann" uniqKey="Lecam Y" first="Yann" last="Lecam">Yann Lecam</name>
<name sortKey="Saker, Safaa" sort="Saker, Safaa" uniqKey="Saker S" first="Safaa" last="Saker">Safaa Saker</name>
<name sortKey="Voit, Thomas" sort="Voit, Thomas" uniqKey="Voit T" first="Thomas" last="Voit">Thomas Voit</name>
</country>
<country name="Malte">
<noRegion>
<name sortKey="Felice, Alex" sort="Felice, Alex" uniqKey="Felice A" first="Alex" last="Felice">Alex Felice</name>
</noRegion>
</country>
<country name="Hongrie">
<region name="Hongrie centrale">
<name sortKey="Karcagi, Veronika" sort="Karcagi, Veronika" uniqKey="Karcagi V" first="Veronika" last="Karcagi">Veronika Karcagi</name>
</region>
</country>
<country name="Slovénie">
<noRegion>
<name sortKey="Meznaric, Marija" sort="Meznaric, Marija" uniqKey="Meznaric M" first="Marija" last="Meznaric">Marija Meznaric</name>
</noRegion>
</country>
<country name="Espagne">
<region name="Communauté de Madrid">
<name sortKey="De La Paz, Manuel Posada" sort="De La Paz, Manuel Posada" uniqKey="De La Paz M" first="Manuel Posada" last="De La Paz">Manuel Posada De La Paz</name>
</region>
</country>
<country name="Allemagne">
<region name="Bavière">
<name sortKey="Schneiderat, Peter" sort="Schneiderat, Peter" uniqKey="Schneiderat P" first="Peter" last="Schneiderat">Peter Schneiderat</name>
</region>
</country>
<country name="Israël">
<noRegion>
<name sortKey="Gurwitz, David" sort="Gurwitz, David" uniqKey="Gurwitz D" first="David" last="Gurwitz">David Gurwitz</name>
</noRegion>
</country>
<country name="Canada">
<noRegion>
<name sortKey="Puymirat, Jack" sort="Puymirat, Jack" uniqKey="Puymirat J" first="Jack" last="Puymirat">Jack Puymirat</name>
</noRegion>
</country>
<country name="Autriche">
<noRegion>
<name sortKey="Zatloukal, Kurt" sort="Zatloukal, Kurt" uniqKey="Zatloukal K" first="Kurt" last="Zatloukal">Kurt Zatloukal</name>
</noRegion>
</country>
</tree>
</affiliations>
</record>

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