Mora Marina, Angelini Corrado, Bignami Fabrizia, Bodin Anne-Mary, Crimi Marco, Di Donato Jeanne-Hélène, Felice Alex, Jaeger Cécile, Karcagi Veronika, 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
Muscle Cell Biology Lab, Neuromuscular Diseases and Neuroimmunolgy Unit, Fondazione Istituto Neurologico C. Besta, Milano, Italy.
1] IRCCS Fondazione San Camillo Hospital, Lido Venice, Italy [2] Department of Neurosciences, NPSRR University of Padova, Padova, Italy.
Eur J Hum Genet. 2015 Sep;23(9):1116-23. doi: 10.1038/ejhg.2014.272. Epub 2014 Dec 24.
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.
欧洲生物样本库（EBB）网络（www.eurobiobank.org）是欧洲首个运营的生物样本库网络，为从事罕见病（RD）研究的科学界提供人类DNA、细胞和组织样本服务。EBB成立于2001年，旨在促进获取罕见病生物样本及相关数据；它于2002年获得欧盟委员会资助（第五框架计划），并于2003年开始运作。在2003 - 2006年欧盟委员会资助期间的设立阶段，奠定了网络运营的基础；随后的巩固阶段，通过新伙伴的加入、更好的网络凝聚力、活动协调的改善以及质量控制体系的建立，网络得以发展壮大。在此阶段，该网络参与了欧盟委员会资助的TREAT - NMD计划，并参与了欧洲生物样本库和生物分子资源研究基础设施的规划。最近，EBB成为RD - Connect的合作伙伴，RD - Connect是一个欧盟第七框架计划，旨在连接罕见病生物样本库、登记处和生物信息学数据。在RD - Connect框架内，EBB贡献专业知识，推广罕见病生物样本库的高专业标准和最佳实践，正在与罕见病患者登记处和“组学”数据进行整合，从而挑战该领域国际合作的碎片化现状。
