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

Marina Mora,Diana Johnson,Safaa Saker,Giuseppe Merla,Mirella Filocamo,Monica Ensini,Marco Crimi,Franca Dagna Bricarelli,Jack Puymirat,Elena Pegoraro,Maurizio Moggio,Stephen Lynn,Peter Schneiderat,Hanns Lochmüller,Manuel Posada De La Paz,Cécile Jaeger,Yann Lecam,Chiara Baldo,Mojgan Reza,Alessandra Renieri,Barbara Garavaglia,Luisa Politano,Veronika Karcagi,Stefano Goldwurm,Fabrizia Bignami,Kurt Zatloukal,Jeanne Hélène Di Donato ,Thomas Voït ,Marija Meznarič ,Lucía Monaco ,David Genevieve ,C Angelini ,F Muntoni ,Anne Mary Bodin ,Alex E Felice

doi:10.1038/ejhg.2014.272

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.

Highlights

The Organisation for Economic Co-Operation and Development (OECD) defines a biobank as ‘A collection of biological material and the associated data and information stored in an organised system, for a population or a large subset of a population’
From 2007, on the network only pays for joint services such as the website, the catalogue updating and annual meetings; while all the EBB partners had to cover their own costs regarding the operation of the biobanks either with institutional funding or with specific grants
Most European citizens have never heard of biobanks nor do they know of their importance in research on rare diseases (RDs)

Summary

INTRODUCTION

The Organisation for Economic Co-Operation and Development (OECD) defines a biobank as ‘A collection of biological material and the associated data and information stored in an organised system, for a population or a large subset of a population’.1 The collection of biological material and data for research and diagnosis has a long history in educational and medical institutions. TREAT-NMD is a network of excellence funded by the EC (framework programme 6, 2007–2011) to provide an infrastructure (including biobanking) promoting the transition of promising new treatments for patients with neuromuscular diseases from preclinical development to clinical practice, and to establish bestpractice care for patients with these diseases. This network, after EC funding expired, has developed from its European roots to become a global organization, the TREAT-NMD Alliance, bringing together leading specialists, patient groups, and industry representatives to ensure readiness for the clinical trials and therapies for the future, while promoting best practices today. From 2007, on the network only pays for joint services such as the website, the catalogue updating and annual meetings; while all the EBB partners had to cover their own costs regarding the operation of the biobanks either with institutional funding or with specific grants (such as Telethon grants supporting TNGB)

TEAMLOG SA

Worked to harmonize SOPs for cell culture sample collection

CONCLUSIONS

Findings

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