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Biofluids and Postmortem Tissue:
The National ALS Registry includes an ALS Biorepository component, which will store both biofluids collected from patients as well as brain, spinal cord and other samples collected postmortem. The program is currently in its pilot stages.
The Department of Veterans Affairs Biorepository Brain Bank is a human tissue bank that collects, processes, stores, and gives out research specimens for future scientific studies. The VABBB provides central nervous system (CNS) tissue and health information to scientists studying disorders such as ALS, primary lateral sclerosis (PLS), progressive bulbar palsy (PBP), and progressive muscular atrophy (PMA), as well as disorders of Veterans of the 1990-91 Gulf War, and posttraumatic stress disorder (PTSD). More information on the tissue request process can be found here.
The Target ALS Foundation has created a multicenter postmortem tissue (PM) core dedicated to ALS research. It has implemented a multicenter policy at harmonization of standard operating procedures for donor recruitment, tissue acquisition, processing, storage, histopathological characterization, and archiving to build up a bank of high quality ALS postmortem tissue. A web-based searchable database enables researchers to query the tissue bank and request appropriate tissue. The tissue is provided with no reach-through on data or intellectual property generated from use of the tissue.
Whole genome sequencing and RNA seq is being conducted at the Center for Genomics of Neurodegenerative Disease at the New York Genome Center for all samples donated to the PM Core, to create an enhanced resource with with clinical, pathological and genetic data associated with the tissue samples. RNAseq will be performed on the following regions of each PM core case: Medial motor cortex, Lateral motor cortex, Cervical spinal cord, Lumbar spinal cord, Frontal Pole Cortex, Cerebellum.
The Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) and the Massachusetts General Hospital Neurological Clinical Research Institute (NCRI) manage a repository of serum, plasma, cerebrospinal fluid (CSF), whole blood, extracted DNA, and urine samples from NEALS and NCRI research studies of ALS and motor neuron disease. The repository is available to researchers for research on ALS and developing disease biomarkers.
The UK Brain Banks Network is an initiative led by the Medical Research Council (MRC) in the UK. The network provides high quality brain tissue for academic and industry researchers in the UK and internationally. Approval is based on scientific merit, and may take into account ethical considerations. Researchers can search an online database with details of all the tissue samples available through the network.
The Alzforum website contains a database of brain banks around the world that collect central nervous system tissue from various neurodegenerative diseases and normal aging controls. The banks share samples and attendant demographic and clinical information with qualified researchers worldwide. The database is searchable by keyword (e.g., ALS, FTD) and country.
Induced Pluripotent Stem Cells:
The National Institute of Neurological Disorders and Stroke (NINDS) has funded a repository of induced pluripotent stem cells (iPSC) that will bank samples from subjects with multiple neurological disorders, including frontotemporal degeneration and Amytrophic lateral sclerosis/motor neuron disease, as well as population controls. A web-based searchable database was recently developed, providing researchers with tools for analytics, searching and ordering for all components of the repository
The Target ALS Foundation has established an ALS stem cell core to provide investigators from academic, non-profit and for-profit (pharma/biotech) organizations access to human stem cells for research purposes. The core goals are (a) to make stem cell models broadly available to the research community (b) to provide appropriately consented ALS-relevant iPSC lines to all members of the community in a manner that is not limited by intellectual property constraints; (c) Provide differentiated derivatives, isogenic controls and reporter lines of importance to ALS researchers;(d) Provide standard protocols and recommended media from the Columbia Stem Cell Core to enhance the success and reproducibility of the ALS research effort. Whole genome sequences and RNA seq is being performed on all the stem cell lines.
The iPSCs are housed Rutgers University, at the same stem cell core as the NINDS repository, and are searchable using the NINDS searchable database.
The UK Motor Neurone Disease (MND) DNA Bank was established with funding from the MND Association and the Wellcome Trust, and contains over 3,000 DNA samples, transformed cell lines and accompanying clinical data from people with ALS/MND, family members and controls. A minimal clinical dataset is available for all samples, and extended clinical dataset is available for most of the collection. The samples are stored as DNA, extracted from blood samples from participants. Information on how to apply can be found here.