.:: What is the EuroBioBank network ?

The EuroBioBank network is the first operating network of biobanks in Europe providing human DNA, cell and tissue samples as a service to the scientific community conducting research on rare diseases. It is the only network dedicated to rare disease research in Europe.

.:: Mission

Rare diseases are devastating and patients urgently need treatments and better care. By creating a critical mass of collections and facilitating the exchange of biological material, the EuroBioBank network helps accelerate future research progress on these diseases. Samples are provided only for selected research projects, the outcomes of which generally result in scientific publications listed on the EuroBioBank website (see Publications)

.:: Goals

· Identify and localise biological material of interest to researchers

· Build a critical mass of rare disease sample collections

· Distribute high quality material and associated data to users

· Promote quality banking practices

· Disseminate knowledge and know-how to the scientific community through training

· Enhance collaboration with the medical and scientific community in the field of rare diseases

.:: Catalogue of samples

The network was established by patients and researchers to facilitate research on rare diseases by guaranteeing quick and easy access to samples via an online catalogue.

The catalogue lists the sample collections available in the EuroBioBank network. To find the required biological samples, a multi-criteria search engine is used. Samples can be selected by disease (name, ICD or MIM number), by type of biological material (DNA, tissue or cells) or by biobank. Once the requested sample is located in the catalogue, an e-request form can be sent directly to the biobank by simply clicking on the biobank's email address appearing next to the sample. This way, the biological material is exchanged much more quickly, thus speeding up rare disease research.

If a sample is not available in the EuroBioBank catalogue, help can be provided to further search it at: contact@eurobiobank.org

.:: Ethics

The EuroBioBank network and independent experts have addressed the ethical issues relating to biobanking activities and developed several documents, available on this website:

- Informed Consent form

- Material Transfer Agreement form

- Ethical Guidelines for Biobanks

- EuroBioBank network charter

.:: History

The EuroBioBank network was established in 2001 by two patient organisations: The French Muscular Dystrophy Association (AFM) and the European Organisation for Rare Diseases (Eurordis), who has since coordinated the network.

Founding partners'list:

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 (banking partner)
Cécile Jaeger (MD, Head of Tissue Bank, Scientific Coordinator of EuroBioBank until 03/2005)

3 - INNCB (Istituto Nazionale Neurologico Carlo Besta), Milan, Italy (banking partner)
Marina Mora (MD, Head of Laboratory)

4 - Fundación CSAI Carlos III , Madrid, Spain (banking 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 (banking 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 (banking partner)
Christine Verellen-Dumoulin (Prof., MD, PhD, Head of the Center for Human Genetics and Medical Genetics Units)

7 - UNIVERSITY OF LJUBLJANA, Lubljana, Slovenia (banking partner)
Marija Meznaric-Petrusa (Assistant Prof., MD, Head of Laboratory)

8 - UOM (University of Malta), Malta (banking partner)
Alexander Felice (Prof., MD, PhD, Head of Laboratory)

9 - MTCC (Muscle Tissue Culture Collection) , Munich, Germany (banking partner)
Hanns Lochmüller (Prof., MD, Head of MTCC, Scientific Coordinator of EuroBioBank since 04/2005)

10 - SUN (Second University of Naples), Caserta, Italy (banking 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 (banking partner)
Veronika Karcagi (PhD, Head of Laboratory)

12 - Ospedale Maggiore Milano IRCCS (University of Milan), Milan, Italy (banking partner)
Maurizio Moggio (MD, Head of Bank)

13 - NMTB (University of Padova), Padova, Italy (Banking partner)
Corrado Angelini (Prof., MD, Head of the Neuromuscular Tissue Bank)

14 - B.E.T. (Bio Expertise Technologies), Marseille, France (until 2004)
Jean-Claude Laurent (PhD, CEO of B.E.T.)

15 - UJF (Université Joseph Fournier), TIMC, Grenoble, France
Olivier Cohen (Prof., MD, PhD)

16 - TEAMLOG SA, Montbonnot, France
Christophe Guitart-Arnau (Technical Manager), Sandrine Villaeys (Project Manager)

Background :

The idea of a network of European biobanks arose out of a particular context and a combination of interrelated elements :

· Letters from families and patients affected by a rare disease offering to participate in research on their disease by giving a blood sample or other biological material.

· Scientific publications on rare diseases that underline the difficulties in finding biological material from "informative" families, a process that can take up to 10 years and consequently delays research.

· The necessity to avoid wasting or loosing samples, particularly when research activities cease (retirement, change of life).

· The intensification of genomic research which raises patients' hope of better diagnoses and new therapies.

· The creation of the Généthon and of the BTR (Tissue Bank for Research) biobanks by the French Muscular Dystrophy Association (AFM), as well as the emergence of networks of French and European biobanks.

Opportunities and EC-funded project:

Opportunities arose with the EU's 5th Framework Programme for Research and Development entitled "Quality of Life and Management of Living Resources" 1998-2002. A project proposal submitted under action line 14.1 "Support for Research Infrastructures" was accepted for negotiations and the contract signed on 11th December 2002 under Proposal N° QLRI-CT-2002-02769. A total budget of 1 220 000 euros was granted by the European Commission for 36 months, starting 1st January 2003 to 31st December 2005. The project period was later exceptionally extended for an extra 3 months, until 31st March.

Achievements of the EuroBioBank project (2003-2006):

16 founding partners from 8 EU countries
12 biobanks
2 IT services companies
1 biotech
8 Work Packages
1 EuroBioBank Network Charter
1 standardised EuroBioBank Material Transfer Agreement (MTA)
1 standardised EuroBioBank Informed Consent form
2,000 copies of the book"Outstanding Legal and Ethical Issues on Biobanks"
1 EuroBioBank website www.eurobiobank.org
1 web-based catalogue displaying 971 sample collections
170,000 samples available at the end of the project
64,000 samples collected during the project period
19,000 samples distributed during the project period
100 teams requested technical support from EuroBioBank
30 Standard Operating Procedures (SOPs) developed by the network
63 publications resulting from research done with samples from the network
41 publications acknowledge EuroBioBank
13 training courses in cell culture and DNA techniques provided
8 posters displayed at international meetings
5 presentations made at international conferences
3,800 copies of the 2 EuroBioBank brochures (lay and scientific)

.:: Entering a New Area: Achievements and Future Challenges

Achievements:

The EuroBioBank network has now entered a new area. When, in 2001, twelve Biological Resource Centres of EuroBioBank joined to form a structured EU network to offer the scientific community one of the essential tools for the development of new therapies for rare diseases, i.e. good quality biological samples, they were already aware of the challenges that the creation and successful development of such a new structure would have to face. Interestingly, all these difficulties have also been identified by the IPTS/ESTO group that conducted a survey from January to June 2006 on "Biobanks in EU: prospects for coordination and networking".

The achievements that the EuroBioBank network has proudly reached - are substantial and officially recognised by European Institutions (Newropeans group and the IPTS/ESTO group itself). The latter cites EuroBioBank as a model for coordination and integration of Biological Resources Centres (BCR) that optimises and improves the use of human biomaterial at European level, as part of the recommendations on strategies for biobanks, which will be made to the European Commission. Today, the EuroBioBank network would like to share the experience and knowledge gained over the past 3 years.

Future challenges:

Although the EuroBioBank network has made considerable progress and met the initial goals set out in the 5th FP project, further challenges have been identified that need to be addressed:

- Increase the diversity of rare disease samples in the network
- Establish new partnerships with rare disease-specific networks of researchers, physicians and patient organisations
- Expand the geographical outreach of the network
- Implement new biobanking techniques and services for researchers
- Develop and implement a large-scale information strategy
- Promote biobanking as an essential part of the research value chain
- Develop a strategy for the long-term sustainability of the network