Notice: Undefined index: HTTP_ACCEPT_LANGUAGE in /DATA/web/docroots/ on line 40

Biobanks and Repositories

The prerequisite for carrying out the basic scientific research on ALS is not only availability of disease animal and cell models, but also an access to high-quality biomaterials from affected and healthy human donors comprising DNA, cells, tissues and biofluids. To this purpose the establishment and maintaining of biobanks and repositories emerged as an important strategic goal integrated into activities of reference centers for ALS diagnosis and treatments as well as supported as a priority by research funding bodies and national and supranational networks.

EuroBioBank is an European Network of DNA, Cell and Tissue Banks for Rare Diseases that assembles banks for rare diseases from 16 European partners. This unique network stores and distributes quality DNA, cell and tissue samples for scientists conducting research on rare diseases, including neuromuscular disorders. Set up by two patient organizations, Eurordis (European Organisation for Rare Diseases) and AFM (Association Française contre les Myopathies), it has been administratively coordinated by Eurordis. For consulting the comprehensive catalogue of human biological resources available in the EuroBioBank network click here.   

Telethon Genetic Biobank Network is constituted by all biobanks supported by Telethon, whose purpose is to collect, preserve and offer to the scientific community, and to Telethon-funded investigators in particular, biological samples and related clinical data from individuals affected by genetic diseases, from their relatives or from healthy control individuals. At present, the Network is constituted of 10 Biobanks. The aim of the Network is to coordinate and manage the biobanks' activities in order to enhance synergy and to provide scientists with an effective service responding to the highest quality standards, according to rigorous ethical principles complying with Italian laws and International Recommendations.

Here listed are some of the biobanks that may offer resources relevant to ALS research, most of which are indeed supported by both EuroBioBank and Telethon.

The Movement Disorders Biobank (MDBB) at Neurological Institute "Carlo Besta" in Milan, Italy, was established in 2002 as a requirement and as a result of the routine activity of the laboratory of Movement Disorders at the Molecular Neurogenetics Unit. The bank currently includes more than 2500 DNA samples. All samples (DNA and fibroblasts) are obtained after informed consent of patients or their legal representatives. The bank also offers storage of biological samples as a service for external institutions. Distribution of samples pertaining to external institutions is done only upon request/permission of the external institution itself. The whole bank activity respects the Italian regulations and received the ISO 9001 certification in 2006. The bank also provides high quality human biological material and accurate phenotypic/genotypic information for association and population studies. Contact address

Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB) at Seconda Università degli Studi di Napoli (SUN) is a DNA/RNA bank that has collected, prepared and stored more than 6500 DNA and tissues from patients affected by different neuromuscular disorders and primary cardiomyopathies. The whole bank activity respects the Italian regulations, in the best technical and ethical possible conditions, and is managed through a database registered with the local authorities. Contact address

Muscle Cell Biology Laboratory at the Division of Neuromuscolar Diseases and Neuroimmunology, Istituto Neurologico "Carlo Besta", Milano was created in 1986 as part of the routine diagnostic activity of the Division. The biobank (first for tissue and since 1991 for cells) stores muscle tissue, DNA and muscle cells from patients with neuromuscular diseases. Contact address

Bank of DNA, cell lines and nerve muscle cardiac tissues at Fondazione Ospedale Maggiore Policlinico IRCCS, Mangiagalli e Regina Elena, Milano  has so far collected 5218 muscle samples, 461 nerve samples, 3304 DNA samles, 605 fibrogenic cell lines, 646
muscle cell lines, 4322 muscle samples for biochemical studies including ALS. Contact address

The Neuromuscular Tissue Bank (NMTB) at Venetian Institute of Molecular Medicine, Padova is located at the Department of Neurosciences at the University of Padova  that has a strong focus on neuromuscular diseases, research and patient care. The biobank collects, processes, stores and distributes muscle tissues to a wide range of neuromuscular disease researchers. Research project focusing on translational medicine  studying the pathogenic mechanism of neuromuscular disorders are preferred and numerous muscle samples are sent to Telethon and international scientists. NMTB was established in 1980 and more than 8000 muscle samples have been collected and analyzed. Contact address

DNA biobank of the Department of Molecular Genetics and Diagnostics at the National Institute of Environmental Health, Hungary; The Department of Molecular Genetics and Diagnostics was established in 1993 and is the only centre in Hungary performing diagnostic activities in neuromuscular diseases, such as Spinal Muscular Atrophy, several forms of muscular dystrophies, hereditary neuropathies, congenital myasthenic syndromes, as well as some mitochondrial disorders. Thus, the laboratory serves as a diagnostic reference centre for neuromuscular diseases in Hungary .The department maintains a DNA biobank and a database of clinical and genetic data of 3902 patients and family members with identified, or yet unidentified mutations. Contact address

Genethon DNA and Cell Bank With a total of 254,022 samples the Bank is one of the largest banks for genetic research in Europe, open to researchers in France or abroad wishing to store samples or use the services provided (extraction, establishment of lines etc). These services are provided at an established rate. Contact address

Muscle Tissue Culture Collection (MTCC) at Friedrich Baur Institute, Department of Neurology, University of Munich. The MTCC biobank collects, processes, stores and distributes myoblasts of a wide range of neuromuscular disease entities. Projects focussing on functional experiments studying the pathogenic mechanism of neuromuscular disorders or the cellular application of molecular therapies in the muscle cell, benefit from this service. MTCC was founded in 1998 and is a service structure of the German Muscular Dystrophy Network MD-NET. More than 2000 muscle samples have been collected, cultivated, analyzed and archived since. Contact address

Myobank AFM Established in 1996 by AFM (Association Française contre les Myopathies), the Bank formerly called « Banque de tissus pour la recherche», is a non-profit service dealing with the collection, preparation, storage and distribution of human tissue samples. The samples come from patients affected by neuromuscular or rare diseases, but also from healthy subjects. 144 rare diseases are represented at the Myobank-AFM. Since its creation, 24 400 samples have been collected and 10 580 samples have been supplied to 165 research teams. This service is available on request (see tissue samples request form on the website) to all French and foreign research teams. Each tissue request is validated by the Scientific Committee of the Myobank-AFM and priority given to research topics focussing on thematic areas supported by AFM. Contact address

Neuromuscular Tissue Bank of the University in Ljubljana The neuromuscular laboratory of the Institute of Anatomy predominantly processes muscle biopsies from patients with inherited muscle diseases Skeletal muscle biopsies are collected from adult and paediatric patients after the patients' or the patients' parents' written informed consent has been obtained. In addition, biomaterial from autopsies - including foetal biomaterial - of patients affected by neuromuscular diseasesis collected and stored. Contact address

UK Human Tissue Bank is a non profit organization established to increase the availability and use of the human tissue in biomedical research. It supplies tissues and isolates a wide range of cells on a commercial scale that researchers need to complete their studies and accelerate research. 

Asterand  is a pharmacological company that maintains biobank of human tissues and biorepository of biofluids, RNA, DNA, and some human tissues-derived cell lines for research and drug development purposes. High quality human tissues preserved tissues in several formats (snap frozen formats  or formalin fixed paraffin embedded), as well as biofluids and DNA, RNA samples derive from  a diverse group of diseases and ethnic populations, are accompanied with complete clinical information and additional biomaterials, and are available for online purchase and immediate shipment to customers.

The Veterans Affairs Biorepository Brain Bank (VABBB) was established in 2006 to promote and support research in amyotrophic lateral sclerosis (ALS) and other illnesses that affect Veterans by collecting brain and spinal cord tissues, along with relevant clinical data, essential for such research. ALS researchers are invited to apply for tissue and data collected from Veterans with ALS.

The Australian Brain Bank Network (ABBN) was established in 2005 with enabling grant funding from the National Health and Medical Research Council, allowing integration of the network by provision of dedicated staffing and infrastructure.

UK Brain Bank Network links 10 U.K. banks that together contain samples from more than 10,000 brains into one centralized, searchable database. Network members have adopted standardized protocols for tissue processing.

The NIH NeuroBioBank (NBB), supported by the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development, brings together multiple stakeholders to facilitate research advancement through the collection and distribution of human post-mortem brain tissue. 

ISBER International Society of Biological and Environmental Repositories

Biobanking and Biomolecular Resources Research Infrastructure and Catalogue of European Biobanks  

Treat NMD Neuromuscolar network has a goal to improve the availability and the exchange of biomaterial among scientists across Europe, in collaboration with the EuroBioBank network.

BrainNet Europe This network of excellence funded by EC in the 6th FP, consists of 19 established brain banks accross Europe. BNE has an extensive stock of human CNS tissue samples registered in a modern database, which is only accessible to BNE Members.  If you would like to request tissue, please fill in the request form and send it to the BNE office.

NINDS ALS Repository 
The ALSA funded NINDS ALS repository of DNA from ALS patients, with available data, can be accessed through the web site of the Coriell Institute for Medical Research with specific SNP data and collection of ALS and control fibroblasts.

NEALS Consortium Sample Repository Available to ALS Researchers 

Human Biospecimen Database or Rare Disease-HUB (RD-HUB). Is a portal that contains a searchable database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe for research use. The purpose of this project is to facilitate research leading to treatments and cures for rare diseases, as well as more common diseases, by improving researchers' access to needed human biospecimens by providing a system that enables them to access information about biorepositories and their collections.

Powered by Sofonisba