Action plan 2011-2013

1 - Biobanking for neuromuscular research Biobanks


1 -

Promote the use of human biomaterials in NMD research

Maintain a centralised, searchable online catalogue and an informational website enabling researchers to source standardized biomaterial worldwide from a single source.

Lucia Monaco, Anna Ambrosini (Telethon Italy)

2 -

Increase the availability of human biomaterials in NMD research

Recruit additional approved biobanks to expand and develop the collection of biomaterials.

Lucia Monaco, Anna Ambrosini
(Telethon Italy)

3 -

Network with other biobanking initiatives

Network with similar initiatives to avoid duplication of effort whilst sharing knowledge and experience.

Lucia Monaco, Anna Ambrosini
(Telethon Italy)

4 -

Improve the quality of human biomaterials in NMD research

Improve overall quality control of biomaterial samples, assess benefits of achieving ISO certification and develop methods for linking samples with clinical data.

Marina Mora, Maurizio Moggio

5 -

Develop and standardise new biomaterial types for NMD research

Develop and standardise new cell lines and other biomaterials in order to meet the growing needs of researchers.

6 -

Leverage academic and industrial use of NMD biomaterials in research

Develop a standardised pricing model for access to biobank material in order to assist with sustainability of affiliated biobanks.

Lucia Monaco, Anna Ambrosini
(Telethon Italy)


Achievements 2011-2013

The EuroBioBank network stores high-quality DNA, cell and tissue samples with the objective to increase the availability and facilitate the access to human biomaterials for research on rare diseases, with a special focus on neuromuscular diseases. EuroBioBank 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 was coordinated by EURORDIS. In 2007 EuroBioBank became part of TREAT-NMD, with a specific responsibility for biobanking activities. Currently funding for coordinating the network is being provided by Fondazione Telethon. Telethon has been also supporting the Italian Network of Genetic Biobanks (TNGB) since 2008, more information available at:

The EuroBioBank network is currently composed of 24 members, of which 21 biobanks are from eight European countries as well as Israel and Canada. 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.The sample exchange is facilitated by conditions set out in the EuroBioBank charter and standardised material transfer agreements.

2012 - 2013 Scientific Activity

The 11th EuroBioBank Annual General Assembly was held in Milan on 14 October 2013. The main discussions focused on ISO certification for biobanks and for the entire EuroBioBank network, cost recovery options for use of biomaterials, informed consent issues, and integration with registries containing clinical data.

The General Assembly agreed that EuroBioBank network applies to become an associated partner of RD-Connect.

In 2012:

- 36 peer-reviewed publications acknowledging EuroBioBank have been published (209 papers since the EuroBioBank has been establoshed)

- approximately 3,500 samples were distributed throughout Europe and beyond (40,000 in total between 2007-2012).

Samples availability

- In 2013, about 100,000 samples were available across the network and they can be browsed via the online catalogue
- Approximately 15,000 new samples are collected each year
- 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
  • Parkinson Disease and parkinsonisms
  • Rett syndrome
  • X-linked mental retardation
  • Chromosomal disorders
  • Skeletal dysplasias
  • Familial hypertrophic cardiomyopathy
  • Idiopathic epilepsy
  • Overgrowth disorders
  • Syndromic deafness
  • Lysosomial storage diseases
Services for scientists:

- Training sessions have been and 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: or visit the EuroBioBank website

12 Apr 2017