EuroBioBank (EBB) is a network of European biobanks providing human DNA, cell and tissue samples as a service to the scientific community conducting research on rare diseases. Biological samples are obtained from patients affected by rare diseases. Currently the network holds specimens for more than 950 rare diseases. EBB has joined the RD-Connect platform and is the biobank network of RD-Connect.
Originally funded by the European Commission between 2003-2006 (FP5; project QLRI-CT-2002-02769), the EuroBioBank received further EC support between 2007-2011 within the European Network of Excellence TREAT-NMD(FP6; LSHM-CT-2006-036825). As of January 2012, the Fondazione Telethon provides the administrative support for coordinating the EuroBioBank network. The efforts and achievements of the network are published in the article “The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases” (Mora et al., 2015).
The EBB Network is currently composed of 25 rare disease biobank members from 9 European countries (France, Germany, Hungary, Italy, Malta, Slovenia, Spain, United Kingdom and Turkey) as well as Israel and Canada.
More than 150,000 biological samples are available across the network and can be requested via the RD-Connect Sample Catalogue. Approximately new 13,000 samples are collected each year and 7,000 samples distributed in Europe and beyond. Currently the network holds specimens for more than 950 rare diseases.
The Coordinator of the network is Dr Lucia Monaco, Fondazione Telethon, Italy, and is supported by Program Manager Dr Chiuhui Mary Wang, Fondazione Telethon, Italy
Past Scientific Coordinators were: Dr Cécile Jaeger (2002-2005), Professor Hanns Lochmüller (2005-2012), Dr Marina Mora (2013-2017).
Samples for research:
– Over 150,000 samples are available across the network
– A central catalogue of samples can be browsed on the RD-Connect website
– Approximately 70,000 samples have been distributed since the formation of the network
– Resulting in over 400 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:
– Standard Operating Procedures (SOPs) for processing DNA, cell and tissue samples 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