Biobanks
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 across Europe, 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 supranational biobanks
Before new, innovative therapeutic strategies can be applied to patients, scientists have to perform numerous pre-clinical 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 twelve biobanks from seven EU countries stores and distributes quality DNA, cell and tissue samples for scientists conducting research on rare diseases, including neuromuscular disorders. 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 has been administratively coordinated by Eurordis (http://www.eurordis.org), Paris, France, since its creation in 2001.
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 (click here to link to publications),
- 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
• DNA extraction techniques (at Second University of Napoli, Italy)
Contact
- Standard Operating Procedures (SOPs) for DNA, cell and tissue can be downloaded from the EuroBioBank website
- Ethics documents are also available online (click here):
• Informed Consent form
• Material Transfer Agreement form (MTA)
• Ethical Guidelines for biobanks
More information at:
or visit the EuroBioBank website:
www.eurobiobank.org
