EuroBioBank

The basic scientific research being carried out on neuromuscular diseases relies on the availability of high-quality biomaterials (DNA, cells and tissue), while clinical trials rely on the availability of suitable patient cohorts. For new treatments to make their way into clinical practice for patients affected with neuromuscular disorders, it is essential that access to biomaterials is facilitated. The improvement of supranational biobanks and the introduction of European patient databases for DMD, SMA and other neuromuscular diseases are therefore major goals of this integrating activity within TREAT-NMD.

Developing and managing international biobanks
Before new, innovative therapeutic strategies can be applied to patients, scientists have to perform numerous preclinical experiments, including tests on biomaterials, such as muscle cells. The idea of a supranational biobank is to provide a network of biobanking facilities that will encourage the storage of biomaterials for NMD patients and help scientists to obtain more easily the specific material they need for their experiments on neuromuscular diseases. Therefore, one goal of TREAT-NMD is to improve the availability and the exchange of biomaterial among scientists across Europe, in collaboration with the already existing EuroBioBank network.

The EuroBioBank Network
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.

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 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 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:

• Primary muscle cell culture (at University of Munich, Germany)
Contact Dr. Peter Schneiderat
• DNA extraction techniques (at Second University of Napoli, Italy)
Contact Prof. Luisa Politano

- Standard Operating Procedures (SOPs) for DNA, cell and tissue can be downloaded from the EuroBioBank website

- Ethics documents are also available online:

• Informed Consent form
• Material Transfer Agreement form (MTA)
• Ethical Guidelines for biobanks

More information at:
contact@eurobiobank.org

or visit the EuroBioBank website:
www.eurobiobank.org



EuroBioBank