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Il Laboratorio di Biologia della Cellula Muscolare è partner fondatore di Eurobiobank. Network Charter 2008.


.:: What is the EuroBioBank network ?

The EuroBioBank network is the first operating network of biobanks in Europe providing human DNA, cell and tissue samples as a service to the scientific community conducting research on rare diseases. It is the only network dedicated to rare disease research in Europe.

· A total of approximately 170,000 samples are available via the online catalogue - 145 cell collections, 544 DNA collections and 282 tissue collections.

· The network is currently composed of 15 members from 7 European countries (France, Germany, Hungary, Italy, Malta, Slovenia and Spain): 11 academic or private biobanks, 2 IT services companies, 1 expert in biobanking management and Eurordis (European Organisation for Rare Diseases) who has coordinated the network since its creation.

· Originally funded by the European Commission between 2003-2006 (see History), EuroBioBank has received funding through grants from the AFM (French Association against Myopathies) and DGM (German Association for Patients with Muscle Disorders) and through membership fees. Since January 2007, the network has participated in the European Network of Excellence TREAT-NMD (FP6) with Eurordis taking the leadership of WP04.1:"Develop and Manage Supranational BioBanks ". As such, it receives EC funding for several of its activities, including coordination of the network and hosting of the website, while each biobank of the network is financed by its own national institution or charitable organisation.

.:: Mission

Rare diseases are devastating and patients urgently need treatments and better care. By creating a critical mass of collections and facilitating the exchange of biological material, the EuroBioBank network helps accelerate future research progress on these diseases. Samples are provided only for selected research projects, the outcomes of which generally result in scientific publications listed on the EuroBioBank website (see Publications)

.:: Goals

· Identify and localise biological material of interest to researchers

· Build a critical mass of rare disease sample collections

· Distribute high quality material and associated data to users

· Promote quality banking practices

· Disseminate knowledge and know-how to the scientific community through training

· Enhance collaboration with the medical and scientific community in the field of rare diseases

.:: Catalogue of samples

The network was established by patients and researchers to facilitate research on rare diseases by guaranteeing quick and easy access to samples via an online catalogue.

The catalogue lists the sample collections available in the EuroBioBank network. To find the required biological samples, a multi-criteria search engine is used. Samples can be selected by disease (name, ICD or MIM number), by type of biological material (DNA, tissue or cells) or by biobank. Once the requested sample is located in the catalogue, an e-request form can be sent directly to the biobank by simply clicking on the biobank's email address appearing next to the sample. This way, the biological material is exchanged much more quickly, thus speeding up rare disease research.

If a sample is not available in the EuroBioBank catalogue, help can be provided to further search it at: Questo indirizzo email è protetto dagli spambots. È necessario abilitare JavaScript per vederlo.

.:: Ethics

The EuroBioBank network and independent experts have addressed the ethical issues relating to biobanking activities and developed several documents, available on this website:

- Informed Consent form

- Material Transfer Agreement form

- Ethical Guidelines for Biobanks

- EuroBioBank network charter

.:: History

The EuroBioBank network was established in 2001 by two patient organisations: The French Muscular Dystrophy Association (AFM) and the European Organisation for Rare Diseases (Eurordis), who has since coordinated the network.

Founding partners'list:

1 - EURORDIS (European Organisation for Rare Diseases), Paris, France
Fabrizia Bignami (PhD, Therapeutic Development Officer, Administrative Coordinator of EuroBioBank)

2 - AFM (Association Française contre les Myopathies), Paris, France (banking partner)
Cécile Jaeger (MD, Head of Tissue Bank, Scientific Coordinator of EuroBioBank until 03/2005)

3 - INNCB (Istituto Nazionale Neurologico Carlo Besta), Milan, Italy (banking partner) Questo indirizzo email è protetto dagli spambots. È necessario abilitare JavaScript per vederlo. (MD, Head of Laboratory)

4 - Fundación CSAI Carlos III , Madrid, Spain (banking partner)
Manuel Posada (MD, Head of Department), Maria-Concepción Martin-Arribas (PhD. in Public Health, Nurse Researcher, Head of the ISCIII biobank and Secretary to the Rare Diseases Ethical Committee)

5 - GENETHON, Evry, France (banking partner)
Jeanne-Hélène di Donato (PhD. Head of the Bank and Collection Department until 10/2004)
Safa Saker (PhD, Head of the DNA and Cell Bank)

6 - UCL (Université Catholique de Louvain), Brussels, Belgium (banking partner)
Christine Verellen-Dumoulin (Prof., MD, PhD, Head of the Center for Human Genetics and Medical Genetics Units)

7 - UNIVERSITY OF LJUBLJANA, Lubljana, Slovenia (banking partner)
Marija Meznaric-Petrusa (Assistant Prof., MD, Head of Laboratory)

8 - UOM (University of Malta), Malta (banking partner)
Alexander Felice (Prof., MD, PhD, Head of Laboratory)

9 - MTCC (Muscle Tissue Culture Collection) , Munich, Germany (banking partner)
Hanns Lochmüller (Prof., MD, Head of MTCC, Scientific Coordinator of EuroBioBank since 04/2005)

10 - SUN (Second University of Naples), Caserta, Italy (banking partner)
Luisa Politano (Prof., MD, Head of the DNA bank)

11 - NATIONAL CENTER FOR PUBLIC HEALTH -NCPH (Fodor József National Center for Public Health), Budapest, Hungary (banking partner)
Veronika Karcagi (PhD, Head of Laboratory)

12 - Ospedale Maggiore Milano IRCCS (University of Milan), Milan, Italy (banking partner)
Maurizio Moggio (MD, Head of Bank)

13 - NMTB (University of Padova), Padova, Italy (Banking partner)
Corrado Angelini (Prof., MD, Head of the Neuromuscular Tissue Bank)

14 - B.E.T. (Bio Expertise Technologies), Marseille, France (until 2004)
Jean-Claude Laurent (PhD, CEO of B.E.T.)

15 - UJF (Université Joseph Fournier), TIMC, Grenoble, France
Olivier Cohen (Prof., MD, PhD)

16 - TEAMLOG SA, Montbonnot, France
Christophe Guitart-Arnau (Technical Manager), Sandrine Villaeys (Project Manager)

 

Background :

The idea of a network of European biobanks arose out of a particular context and a combination of interrelated elements :

  • Letters from families and patients affected by a rare disease offering to participate in research on their disease by giving a blood sample or other biological material.
  • Scientific publications on rare diseases that underline the difficulties in finding biological material from "informative" families, a process that can take up to 10 years and consequently delays research.
  • The necessity to avoid wasting or loosing samples, particularly when research activities cease (retirement, change of life).
  • The intensification of genomic research which raises patients' hope of better diagnoses and new therapies.
  • The creation of the Généthon and of the BTR (Tissue Bank for Research) biobanks by the French Muscular Dystrophy Association (AFM), as well as the emergence of networks of French and European biobanks.

 

Opportunities and EC-funded project:

Opportunities arose with the EU's 5th Framework Programme for Research and Development entitled "Quality of Life and Management of Living Resources" 1998-2002. A project proposal submitted under action line 14.1 "Support for Research Infrastructures" was accepted for negotiations and the contract signed on 11th December 2002 under Proposal N° QLRI-CT-2002-02769. A total budget of 1 220 000 euros was granted by the European Commission for 36 months, starting 1st January 2003 to 31st December 2005. The project period was later exceptionally extended for an extra 3 months, until 31st March.

Achievements of the EuroBioBank project (2003-2006):

  • 16 founding partners from 8 EU countries
  • 12 biobanks
  • 2 IT services companies
  • 1 biotech
  • 8 Work Packages
  • 1 EuroBioBank Network Charter
  • 1 standardised EuroBioBank Material Transfer Agreement (MTA)
  • 1 standardised EuroBioBank Informed Consent form
  • 2,000 copies of the book"Outstanding Legal and Ethical Issues on Biobanks"
  • 1 EuroBioBank website www.eurobiobank.org
  • 1 web-based catalogue displaying 971 sample collections
  • 170,000 samples available at the end of the project
  • 64,000 samples collected during the project period
  • 19,000 samples distributed during the project period
  • 100 teams requested technical support from EuroBioBank
  • 30 Standard Operating Procedures (SOPs) developed by the network
  • 63 publications resulting from research done with samples from the network
  • 41 publications acknowledge EuroBioBank
  • 13 training courses in cell culture and DNA techniques provided
  • 8 posters displayed at international meetings
  • 5 presentations made at international conferences
  • 3,800 copies of the 2 EuroBioBank brochures (lay and scientific)

.:: Entering a New Area: Achievements and Future Challenges

Achievements:
The EuroBioBank network has now entered a new area. When, in 2001, twelve Biological Resource Centres of EuroBioBank joined to form a structured EU network to offer the scientific community one of the essential tools for the development of new therapies for rare diseases, i.e. good quality biological samples, they were already aware of the challenges that the creation and successful development of such a new structure would have to face. Interestingly, all these difficulties have also been identified by the IPTS/ESTO group that conducted a survey from January to June 2006 on "Biobanks in EU: prospects for coordination and networking".

The achievements that the EuroBioBank network has proudly reached - are substantial and officially recognised by European Institutions (Newropeans group and the IPTS/ESTO group itself). The latter cites EuroBioBank as a model for coordination and integration of Biological Resources Centres (BCR) that optimises and improves the use of human biomaterial at European level, as part of the recommendations on strategies for biobanks, which will be made to the European Commission. Today, the EuroBioBank network would like to share the experience and knowledge gained over the past 3 years.

Future challenges:
Although the EuroBioBank network has made considerable progress and met the initial goals set out in the 5th FP project, further challenges have been identified that need to be addressed:

  • Increase the diversity of rare disease samples in the network
  • Establish new partnerships with rare disease-specific networks of researchers, physicians and patient organisations
  • Expand the geographical outreach of the network
  • Implement new biobanking techniques and services for researchers
  • Develop and implement a large-scale information strategy
  • Promote biobanking as an essential part of the research value chain
  • Develop a strategy for the long-term sustainability of the network

Partnership


Dr. Marina Mora

Scientific coordinator of EuroBioBank since November 2012

Phone: +39-02 23 94 2632
Fax: +39-02 23 94 2619

Dr. Marina Mora is research biologist, head of the Muscle Cell Biology laboratory, Division of Neuromuscular Diseases and Neuroimmunology, at the Neurological Institute C. Besta in Milan.

Marina works in muscle pathology since she was a student and has been involved in neuromuscular diseases ever since. At first she trained in muscle histopathology; during her postdoctoral fellowship at Mayo Clinic, Rochester, MN (1983-86) she was involved in research on neuromuscular junction defects. When returning to Italy, she has set up immunochemical and molecular tests for the diagnosis of muscle diseases, and has been involved in research studies on molecular characterization of muscular dystrophy defects and with investigation of the underlying pathogenic mechanisms.

Since the late eighties Marina has also been concerned with the organization of a muscle cell and tissue biobank at the Division of Neuromuscular Diseases, and in 2001 was funding member of the EuroBioBank network.

Marina has been elected scientific coordinator of EuroBioBank in November 2012, taking over from Hanns Lochmüller (2005 -2012).

 

RD-Connect is a unique global infrastructure project that links up databases, registries, biobanks and clinical bioinformatics data used in rare disease research into a central resource for researchers worldwide.

In a six-year project funded by the European Union but uniting researchers across the world, it will develop an integrated research platform in which complete clinical profiles are combined with -omics data and sample availability for rare disease research, in particular research funded under the International Rare Diseases Research Consortium (IRDiRC).

RD-Connect overview page

Riviste e pubblicazioni

SCIENCE- Science Magazine

Nature online - The world's best scienze and medicisne on your desktop

Human Molecular Genetics - The world's best scienze and medicisne on your desktop

Sience Magazine - The world's best scienze and medicisne on your desktop

Molecular and cellular biology - The world's best scienze and medicisne on your desktop

The journal of cell biology - The world's best scienze and medicisne on your desktop

MBC Online - Molecular Biology of the Cell

Preferiti

Istituto Neurologico Besta

INNBesta - Rassegna Stampa Istituto Neurologico

Eurordis Molecular Biology - Molecular Biology Today

UILDM - La biblioteca online per ricevere comunicazioni dalla UILDM

NCBI - National Center for Biotechnology Information

CNR - Istituto di Neuroscienze

Associazioni

Associzioni Scientifiche

AIM - Associazione Italiana Miastenia e Malattie Immunodegenerative – Amici del Besta Onlus

AIM - Associazione Italiana di Miologia

ORPHANET - Il portale delle malattie rare e dei farmaci orfani

Associazioni Pazienti

Associazione Italiana Miastenia e Malattie Immunogenerative -  Sito dell'Associazione Italiana Miastenia e Malattie Immunodegenerative - Amici del Besta - Sezione di Bergamo

AISM- Associazione Italiana Sclerosi Multipla

ASAMSI - Associazione per lo Studio delle Atrofie Muscolari Spinali Infantili

AIG - Associazione Italiana Glicogenosi

FamiglieSMA - SMA è l’acronimo di atrofia muscolare spinale

Telethon Network of Genetic Biobanks

 

The Telethon Network of Genetic Biobanks (TNGB) has been founded in 2008 by 7 Biobanks supported by Telethon Foundation, whose purpose is to collect, preserve and offer to the Scientific Community biological samples and related clinical data from individuals affected by genetic diseases, from their relatives or from healthy control individuals. TNGB also offers its services to Patient Organisations.

At present, the Network is constituted of 11 Biobanks.

The aim of the Network is to coordinate and manage the Biobanks' activities in order to enhance synergy and provide scientists with an effective service responding to the highest quality standards, according to rigorous ethical principles complying with Italian laws and International Recommendations.

Over the years, national and international scientists have extensively used the TNGB with different purposes. The complete list of the scientific publications acknowledging the TNGB services is available here.

At the European level, TNGB is partnering with EuroBioBank Network and since its inception the Network has joined as associated member the pan-European research infrastructure BBMRI. Since 2014, all Biobanks of the Network have been admitted to the Italian Node (BBMRI-IT) and have signed the BMMRI-IT Partner Charter. TNGB also is one of the associated partners of the European RD-connect project aimed at connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.