- Mary Wang Mary Wang is a Research Program Manager in the Scientific Office of Fondazione Telethon, Italy....
- EuroBioBank report
- Download the open access report - The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases.
This unique network of 16 biobanks from 8 EU countries stores and distributes quality DNA, cell and tissue samples for scientists conducting research on rare diseases, including neuromuscular disorders. It was set up by two patient organisations, now partners of TREAT-NMD, EURORDIS (European Organisation for Rare Diseases) and AFM (Association Française contre les Myopathies).
It received its initial funding in 2001 through the European Union's Fifth Framework Programme and is coordinated by EURORDIS. Its objective is to increase the availability of and facilitate access to and use of high quality human biomaterials for research on rare diseases, with a special focus on neuromuscular diseases.
In 2007 EuroBioBank became part of TREAT-NMD, where it is responsible for biobanking activities.
Currently funding for coordination of the biobank is being provided by Fondazione Telethon. Telethon has been supporting genetic biobanks in Italy since 1993. In 2008, Telethon unified all of its biobanks, creating the first Italian Network of Genetic Biobanks (TNGB), more information available at: www.biobanknetwork.org.
Biobanks and biomaterial collections across the world may join EuroBioBank. All samples remain in the possession of the member biobank, with EuroBioBank acting as a clearing house or "virtual" bank with an online catalogue and search engine for locating samples. Researchers from anywhere in the world who locate a sample of interest through the catalogue then liaise directly with the bank holding the sample, with sample exchange being facilitated by conditions set out in the EuroBioBank charter and standardised material transfer agreements.
Over 440,000 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 throughout Europe and beyond.
Samples for research:
- Over 400,000 samples are available across the network,
- A central catalogue of samples can be browsed on the EuroBioBank website,
- Approximately 35,000 samples were distributed between 2003-2007,
- Resulting in 58 peer-reviewed publications acknowledging EuroBioBank,
- Types of pathologies include:
• Congenital myasthenic syndromes
• Congenital myopathies
• Inherited polyneuropathies
• Malignant hyperthermia
• Metabolic muscle diseases
• Motor neuron disease
• Muscular dystrophies
• Myotonic disorders
• Spinal muscular atrophies
Services for scientists:
- Training sessions can be organised upon request:
• Informed Consent form
• Material Transfer Agreement form (MTA)
• Ethical Guidelines for biobanks