.:: 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.

• Over 400,000 samples are available across the network and can be requested via the online catalogue. Approximately 13,000 samples are collected each year and 7,000 samples distributed in Europe and beyond. The biological samples are obtained from patients affected by rare diseases, including rare neuromuscular disorders.

• The EuroBioBank Network is currently composed of 13 biobanks from 7 European countries (France, Germany, Hungary, Italy, Malta, Slovenia and Spain) and Israel.

• EuroBioBank is coordinated by EURORDIS (European Organisation for Rare Diseases, Paris, France) for the administrative activities, under the responsibility of Fabrizia Bignami, PhD., administrative coordinator, assisted by Anne-Mary Bodin.

• Professor Hanns Lochmuller (Newcastle University, UK) has been coordinating the scientific activities of the network since 2005.

Funding and Collaboration

Originally funded by the European Commission between 2003-2006, EuroBioBank has participated in the European Network of Excellence TREAT-NMD (FP6) since January 2007, with EURORDIS taking the leadership of WP04.1:“Develop and Manage Supranational BioBanks ». As such, it receives EC funding for coordination of the network and hosting of the website, while each biobank of the network is financed by its own national institution or charitable organisation. Moreover, a collaboration has been established with BBMRI (European Biobanking & Biomolecular Resources Research Infrastructure) .

:: 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 research on these diseases. Samples are provided for selected research projects, the outcomes of which generally result in scientific publications listed on the EuroBioBank website.

.:: 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 best-practice guidelines for biobanking activities
• Disseminate knowledge and know-how to the scientific community through training courses
• 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 samples available throughout the EuroBioBank network by type of biomaterial. A search engine enables a search by disease or by bank contact.

Once a sample has been located in the catalogue, it can be requested by email. Therefore, the biological material is exchanged faster.

If a sample does not appear 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: Association Française contre les Myopathies (AFM) and the European Organisation for Rare Diseases (EURORDIS), who has since coordinated the network.

Background :

The idea of a network of European biobanks arose out of a particular context and a combination of events :
• 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.
• The intensification of genomic research which raises patients' hope of better diagnoses and new therapies.
• The creation of two biobanks - Généthon and Myobank-AFM (formerly Banque de Tissus pour la Recherche)- by the Association Française contre les Myopathies (AFM), as well as the emergence of French and European networks of biobanks.

Opportunities and EC-funded project :

Opportunities arose with the European 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 2006.

.:: New Challenges

Since its involvement in TREAT-NMD, the EuroBioBank network has particularly focussed on:

• Improving operating procedures for the exchange and use of samples
• Implementing quality control
• Enhancing the quality of the online catalogue entries
• Assessing customer satisfaction
• Attracting new members
• Disseminating information about EuroBioBank

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