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Presentation of the EuroBioBank Network

EuroBioBank is a European network of biological banks established in 2001. The EuroBioBank Network is fully dedicated to supporting research into rare diseases by facilitating access to quality human biological resources (DNA, cells and tissues) and their associated data from patients with rare diseases. From 2003 to 2005, the EuroBioBank Network has received grants from the European Commission, under the European Union's Fifth Framework Programme "Quality of Life and Management of Living Resources". Its purpose is to expand by associating new biobanking members across Europe.

The founding partners of the EuroBioBank Network

The 16 EuroBioBank Network founding partners (as listed hereunder) represent 8 European countries (Belgium, France, Germany, Hungary, Italy, Malta, Slovenia, Spain) and is composed of 12 academic or private biobanks, 2 IT services companies, 1 biotech company and 1 patient organisation, Eurordis (European Organisation for Rare Diseases), who initiated and coordinated the European project. This key Network dedicated to research into rare diseases is supported by patient associations.

	# Organisation Persons involved
	1 EURORDIS (European Organisation for Rare Diseases) Paris, France Fabrizia Bignami (PhD, Therapeutic Development Officer, Administrative Coordinator of EuroBioBank) 2 AFM (Association Française contre les Myopathies) Paris, France    Banker partner Cécile Jaeger (MD, Head of Tissue Bank, Scientific Coordinator of EuroBioBank until 03/2005) 3 INNCB (Istituto Nazionale Neurologico Carlo Besta) Milan, Italy    Banker partner Marina Mora (MD, Head of Laboratory) 4 Fundación CSAI Carlos III Madrid, Spain    Banker partner Manuel Posada (MD, Head of Department) Maria-Concepción Martin-Arribas (PhD. in Public Health, Nurse Researcher, Head of the ISCIII biobank and Secretary to the Rare Diseases Ethical Committee) 5 GENETHON Evry, France    Banker partner Jeanne-Hélène di Donato (PhD. Head of the Bank and Collection Department until 10/2004) Safa Saker (PhD, Head of the DNA and Cell Bank) 6 UCL (Université Catholique de Louvain) Brussels, Belgium    Banker partner Christine Verellen-Dumoulin (Prof., MD, PhD, Head of the Center for Human Genetics and Medical Genetics Units) 7 UNIVERSITY OF LJUBLJANA Lubljana, Lubljana    Banker partner Marija Meznaric-Petrusa (Assistant Prof., MD, Head of Laboratory) 8 UOM (University of Malta) Malta    Banker partner Alexander Felice (Prof., MD, PhD, Head of Laboratory) 9 MTCC (Muscle Tissue Culture Collection) Munich, Germany    Banker partner Hanns Lochmüller (Prof., MD, Head of MTCC, Scientific Coordinator of EuroBioBank since 04/2005) 10 SUN (Second University of Naples) Caserta, Italy    Banker partner Luisa Politano (Prof., MD, Head of the DNA bank) 11 NATIONAL CENTER FOR PUBLIC HEALTH-NCPH (Fodor József National Center for Public Health) Budapest, Hungary    Banker partner Veronika Karcagi (PhD, Head of Laboratory) 12 Ospedale Maggiore Milano IRCCS (University of Milan) Milan, Italy    Banker partner Maurizio Moggio (MD, Head of Bank) 13 NMTB (University of Padova) , Padova, Italy    Banker partner Corrado Angelini (Prof., MD, Head of the Neuromuscular Tissue Bank) 14 B.E.T. (Bio Expertise Technologies) Marseille, France (Partner until 2004) Jean-Claude Laurent (PhD, CEO of B.E.T.) 15 UJF (Université Joseph Fournier) Grenoble, France Olivier Cohen (Prof., MD, PhD) 16 TEAMLOG SA Montbonnot, France Christophe Guitart-Arnau (Technical Manager) Sandrine Villaeys (Project Manager)

The achievements of the EuroBioBank Network between 2003-2005

Between 2003 and 2005, while financed by the European Commission, major milestones were achieved by the EuroBioBank Network.

Common quality criteria were defined; Standard Operating Procedures and ethical guidelines were developed; standards for material transfer and biobanking were adopted; a new dedicated website www.eurobiobank.org (www.eurobiobank.com /www.eurobiobank.net) was developed to offer services to the scientific community. A web-based catalogue of samples available throughout the EuroBioBank Network was launched. It was specifically designed to provide easy access to referenced samples and to allow for the presentation of the collections. This is a key service which brings high added-value to the EuroBioBank Network as it enables researchers to quickly access the available collections and immediately send the specific EuroBioBank request procedure.

The EuroBioBank Network has been instrumental in promoting standardised and quality banking practices among biobankers in accordance with the OECD's recommendations1 on Biological Resources Centers (BRCs), through use of the documents generated by the EuroBioBank Network and published on its dedicated website (Standard Operating Procedures-SOPs, Material Transfer Agreement -MTA and the Informed Consent form).

Today, the EuroBioBank Network represents approximately 155,000 documented human biological samples, available via the 12 biobanks of the EuroBioBank Network, of which about 65,000 DNA samples, 20,000 tissue samples and 45,000 cells (lymphocytes, fibroblasts and myoblasts). In 2004, the samples flow reached approximately 6,800 samples (DNA, tissue and cells), indicating that the EuroBioBank Network effectively contributes to build a critical mass of collections which are vital for research on rare diseases.

Researchers may access the biological resources available within the EuroBioBank Network through its online catalogue of samples and can also receive technical support for sample use, by e-mail and phone.

Objectives and future developments

The EuroBioBank Network is supportive of the long-term promotion of BRCs networking on rare diseases through its dedicated website, the organisation of regular meetings between stakeholders and specialised training sessions on various biobanking techniques.

The EuroBioBank Network founding partners intend to consolidate the Network as a self-sustained structure in the long-term and establish EuroBioBank as a permanent and integrated European service Network for research on rare diseases.

The founding partners are fully dedicated to :

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