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

Mora M, Angelini C, Bignami F, Bodin AM, Crimi M, Di Donato JH, Felice A, Jaeger C, Karcagi V, LeCam Y, Lynn S, Meznaric M, Moggio M, Monaco L, Politano L, de la Paz MP, Saker S, Schneiderat P, Ensini M, Garavaglia B, Gurwitz D, Johnson D, Muntoni F, Puymirat J, Reza M, Voit T, Baldo C, Bricarelli FD, Goldwurm S, Merla G, Pegoraro E, Renieri A, Zatloukal K, Filocamo M, Lochmüller H - Eur. J. Hum. Genet. (2014)

Bottom Line: 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.Recently, EBB became a partner of RD-Connect, an FP7 EU programme aimed at linking RD biobanks, registries, and bioinformatics data.

View Article: PubMed Central - PubMed

Affiliation: Muscle Cell Biology Lab, Neuromuscular Diseases and Neuroimmunolgy Unit, Fondazione Istituto Neurologico C. Besta, Milano, 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.

No MeSH data available.


Related in: MedlinePlus

Scheme illustrating interactions of EBB with European organisations and networks. Coordination of RD-Connect is lead by Hanns Lochmüller, who has also been the coordinator of TREAT-NMD; coordinator of the Telethon Network of Genetic Biobanks is Mirella Filocamo; coordinator of BBMRI during the preparatory phase was Kurt Zatloukal, now BBMRI-ERIC has a general director which is Jan-Eric Litton; EURORDIS is coordinated by a Board of Directors composed of elected RD patient organization representatives from countries around Europe (www.eurordis.org); IRDiRC is governed by an executive committee, three scientific committees and a number of working groups (www.irdirc.org).
© Copyright Policy - open-access
Related In: Results  -  Collection

License
getmorefigures.php?uid=PMC4538193&req=5

fig1: Scheme illustrating interactions of EBB with European organisations and networks. Coordination of RD-Connect is lead by Hanns Lochmüller, who has also been the coordinator of TREAT-NMD; coordinator of the Telethon Network of Genetic Biobanks is Mirella Filocamo; coordinator of BBMRI during the preparatory phase was Kurt Zatloukal, now BBMRI-ERIC has a general director which is Jan-Eric Litton; EURORDIS is coordinated by a Board of Directors composed of elected RD patient organization representatives from countries around Europe (www.eurordis.org); IRDiRC is governed by an executive committee, three scientific committees and a number of working groups (www.irdirc.org).

Mentions: When the EC-funded period expired (31 March 2006), EBB was kept going with funds contributed by each partner for 1 year in order to maintain the catalogue functional, meet annually, and seek further funding. In 2007, EBB became part of the TREAT-NMD project in order to carry out biobanking for translational research in neuromuscular disorders (Figure 1). 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 best-practice 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.


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

Mora M, Angelini C, Bignami F, Bodin AM, Crimi M, Di Donato JH, Felice A, Jaeger C, Karcagi V, LeCam Y, Lynn S, Meznaric M, Moggio M, Monaco L, Politano L, de la Paz MP, Saker S, Schneiderat P, Ensini M, Garavaglia B, Gurwitz D, Johnson D, Muntoni F, Puymirat J, Reza M, Voit T, Baldo C, Bricarelli FD, Goldwurm S, Merla G, Pegoraro E, Renieri A, Zatloukal K, Filocamo M, Lochmüller H - Eur. J. Hum. Genet. (2014)

Scheme illustrating interactions of EBB with European organisations and networks. Coordination of RD-Connect is lead by Hanns Lochmüller, who has also been the coordinator of TREAT-NMD; coordinator of the Telethon Network of Genetic Biobanks is Mirella Filocamo; coordinator of BBMRI during the preparatory phase was Kurt Zatloukal, now BBMRI-ERIC has a general director which is Jan-Eric Litton; EURORDIS is coordinated by a Board of Directors composed of elected RD patient organization representatives from countries around Europe (www.eurordis.org); IRDiRC is governed by an executive committee, three scientific committees and a number of working groups (www.irdirc.org).
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4538193&req=5

fig1: Scheme illustrating interactions of EBB with European organisations and networks. Coordination of RD-Connect is lead by Hanns Lochmüller, who has also been the coordinator of TREAT-NMD; coordinator of the Telethon Network of Genetic Biobanks is Mirella Filocamo; coordinator of BBMRI during the preparatory phase was Kurt Zatloukal, now BBMRI-ERIC has a general director which is Jan-Eric Litton; EURORDIS is coordinated by a Board of Directors composed of elected RD patient organization representatives from countries around Europe (www.eurordis.org); IRDiRC is governed by an executive committee, three scientific committees and a number of working groups (www.irdirc.org).
Mentions: When the EC-funded period expired (31 March 2006), EBB was kept going with funds contributed by each partner for 1 year in order to maintain the catalogue functional, meet annually, and seek further funding. In 2007, EBB became part of the TREAT-NMD project in order to carry out biobanking for translational research in neuromuscular disorders (Figure 1). 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 best-practice 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.

Bottom Line: 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.Recently, EBB became a partner of RD-Connect, an FP7 EU programme aimed at linking RD biobanks, registries, and bioinformatics data.

View Article: PubMed Central - PubMed

Affiliation: Muscle Cell Biology Lab, Neuromuscular Diseases and Neuroimmunolgy Unit, Fondazione Istituto Neurologico C. Besta, Milano, 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.

No MeSH data available.


Related in: MedlinePlus