EU funded network provides human biological material for research on rare diseases

October 5, 2005

Brussels, 04 Oct 2005

EuroBioBank is the first operating network of biological banks in Europe, providing human biological material for research on rare diseases. The networked 'bio banks' provide precious DNA, tissue and cells material to support research on rare diseases, which affect between 24 and 36 million people in the European Union.

'Previously, researchers used to store sample collections in their laboratories, just using them for their own work,' explains Dr Cécile Jaeger, head of the AFM Tissue Bank for Research and scientific coordinator for EuroBioBank. 'Our consortium on the other hand makes nearly 150,000 documented samples available to the whole research community, accelerating rare disease research and generating twenty publications in 2004 alone.' EuroBioBank has also made available a total of approximately 65,000 DNA samples and 15,000 tissue samples via the 12 banks of the consortium.

The idea of the project stems from a particular context and a combination of related elements. While scientific publications on rare diseases underline the difficulties in finding biological material from 'informative' families, a process that can take up to ten years and consequently delays research, letters from families and patients affected by a rare disease show the will of these persons to voluntarily participate in research on their disease by giving a blood sample or other biological material. The necessity to avoid wasting or loosing these invaluable samples, particularly when research activities cease, was also felt.

The intensification of genomic research and the creation of the first biobanks, Genethon and BTR (Tissue Bank for Research) by the French Muscular Dystrophy Association, which had long encouraged the collection and storage of biological material, and the emergence of networks with other French and European banks to exchange these materials, also helped to form the idea.

The 36 month project, due to end in December 2005, is funded with 1.2 million euro by the European Union's, 'quality of life and management of living resources' programme under the Fifth Framework Programme for Research and Development (FP5). The network gathers a consortium of 16 partners from eight European countries (Belgium, France, Germany, Hungary, Italy, Malta, Slovenia, Spain): 12 academic or private tissue banks, two computer services companies (software designer and developer), a biotech company and Eurordis (European Organisation for Rare Diseases), which initiated the project.

Whilst financing for the network's activities comes from FP5, participating bio banks and their staff are financed through their own institutions or by charitable organisations. In the long run, the project aim is to develop means of self-support in order to sustain the network beyond the year 2005.

EuroBioBank activities focus on the implementation of high quality criteria for common banking practices (collection, transport, storage and exchange of biological material) adapted to each type of material (DNA, tissue, cell). They also include developing standard operating procedures for the preparation and development of biological material, as well as addressing ethical issues connected with the collection and exchange of samples. Work has also progressed on the unified database catalogue of the network's rare disease samples of DNA, cells and tissues. Defining database entries was the first challenge, and was addressed with the development of standardised vocabulary lists began. The first concrete result was a list of neuromuscular disorders, approved and adopted by all partner banks.

Another important focus area for the EuroBioBank project has been communication: knowledge-sharing with bio-bankers and making the scientific community aware of the existence and importance of the network, particularly through training programmes and information activities. Web-based access to the network for both researchers and for the rare disease patient community and general public is pivotal in the success of disseminating the collective knowledge that a networking of bio banks achieves.

In May 2005, the European network of biological resource centres, initiated by Eurordis, was awarded with a 2004 Newropeans Grand Prix, in recognition of the scientific, technological and public service contribution of the network. 'The fact is that this network of bio-banks is the only one dedicated to rare diseases. Hungary, Malta and Slovenia were integrated, joining five other Member States, even before they officially entered the European Union,' highlighted Fabrizia Bignami, coordinator of the network's administration at Eurordis. 'Also worthy of note - and key for research - is that this project is supported directly by patient organisations.'

The long-term aim is that any researcher anywhere, whatever the rare pathology, whatever the physiological entity, can access and search the database of available material online, thus facilitating the development of new therapies for 30 million people in Europe.

CORDIS RTD-NEWS / © European Communities
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