Canadian Biobank Map
The NMD4C is committed to strengthening the biobanking resources available to Canadian neuromuscular researchers. Future plans include the development of a virtual Canadian biobank, a central catalogue which will contain the neuromuscular samples available for research at the different biobanking sites.
While the virtual biobank is in development, the NMD4C biobanking group has identified eight Canadian neuromuscular biobanks that collect and prepare a variety of samples covering a range of neuromuscular diseases. Each of these sites has kindly provided information about what samples they collect and the conditions and policies for researchers to access them, which you can find listed on our interactive map.
If you know of any biobanks that we have missed or are involved in sample collection yourself and are interested in being listed on the NMD4C site and contributing to the virtual biobank catalogue, please let us know!
Banque de données et de matériel biologique des maladies neuromusculaires et autres maladies apparentées (BDMB-MNM-MA)
Contact: Dr. Élise Duchesne, Associate Professor; ; 418 545-5011, poste 6148
Website: http://www.uqac.ca/portfolio/eliseduchesne/
Host Institution: Université du Québec à Chicoutimi / CIUSSS du Saguenay-Lac-St-Jean
What we Have
NMDs: myotonic dystrophy type 1, autosomal recessive spastic ataxia of Charlevoix-Saguenay and healthy controls
Samples collected: Tissue
Context of samples collected: Research; Biobanking
Associated Data: Molecular
How You Can Access Samples
MTA: Yes
Do you have an ethical committee approval for your biobank/biorepository: Yes, the management framework is approved for each project using or contributing to the biobank.
Context of samples used: Research
Summary
Founded in 2013, the Banque de données et de matériel biologique des maladies neuromusculaires et autres maladies apparentées (BDMB-MNM-MA) contains samples in the trust of Dr. Élise Duchesne which belong to the patient, hosted at the CIUSSS Saguenay-Lac-Saint-Jean Biobank.
BC Children’s Hospital Biobank
Contact: Veronica Chow, BioBank laboratory manager; ; 604-875-2000 #7497
Website: https://www.bcchr.ca/biobank
Host Institution: BC Children's and Women's Hospitals and Research Institutes; Vancouver, BC
What we Have
NMDs: Motor neuron disease (SMA/ALS); Myopathies/muscular dystrophies
Samples collected: Whole blood; Cells; Tissue; Urine; Saliva
Context of samples collected: Diagnosis; Biobanking
Associated Data: Clinical; Molecular; Imaging
How You Can Access Samples
MTA: Yes
ethical committee approval for your biobank/biorepository: Yes
Context of samples used: Research; Diagnosis; Biobanking
Summary (biobank-fact-sheet.pdf (bcchr.ca))
Information video: BC Children's Hospital BioBank - Superhero Video - YouTube
The BC Children’s Hospital BioBank collects and stores pediatric biological samples such as tissue and blood and their clinical information from children with a variety of diseases for researchers to access once their studies have ethical approval. To apply for samples, fill out an application form (http://www.bcchr.ca/biobank/research) and submit to . The BioBank is open to researchers all over Canada and worldwide! In addition to storing biological samples and clinical information, the BioBank offers many other services including consenting, processing, clinical data entry, storage, and processing.
C-BIG Repository
Contacts: Lydiane Gaborieau, Mahdieh Tabatabaei Shafiei, Marie-Noëlle Boivin;
Website: https://www.mcgill.ca/neuro/open-science/c-big-repository
Host Institution: McGill University / Montreal Neurological Institute
What we Have
NMDs covered: Motor neuron disease (SMA/ALS); Peripheral neuropathies (CMT); NMJ disorders (MG/CMS); Myopathies/muscular dystrophies; Mitochondrial NMDs; Inflammatory Myositis iPSC cell lines.
Samples collected: Whole blood; PBMCs; Skeletal Muscle; Peripheral Nerve; Urine; Saliva; CSF; Skin (fibroblasts); Brain tissue (for patients undergoing neurosurgical intervention)
Context of samples collected: Research; Diagnosis; Biobanking.
Associated Data: Clinical; Molecular; Imaging; Genetic
How You Can Access Samples
Data and samples are listed in the C-BIG data portal: https://cbigr-open.loris.ca/
Requests for tissue can be made through portal
MTA: We have an 'Open Transfer Agreement' to facilitate the transfer of materials to collaborators outside of McGill University
Do you have an ethical committee approval for your biobank/biorepository: Yes
Context of samples used: Research; Industry Collaboration
Summary
The Neuro’s C-BIG Repository is an Open Science collection of biological samples, clinical information, imaging, and genetic data from patients with neurological disease as well as from healthy control subjects. This platform was created to allow patients to actively participate in advancing our understanding of the diseases affecting them, and reflects the vision of Dr. Penfield when he founded The Neuro. Data and samples collected in the C-BIG Repository will be made available to research teams with scientifically and ethically valid proposals around the world, congruent with Open Science principles.
Canadian Inflammatory Myopathy Study (CIMS)
Contact: Dr. Marie Hudson, Associate professor, McGill University Physician-scientist, Jewish General Hospital and Lady Davis Institute; ; 514-340-8222 x25408
Website: https://www.canadianims.org/
Host Institution: Lady Davis Institute, 3755 Cote Ste Catherine, Montreal, QC, H3T 1E2
What we Have
NMDs: Acquired inflammatory myopathies (including inclusion body myositis)
Samples collected: Tissue; Muscle biopsies; Stool
Context of samples collected: Research; Diagnosis; Biobanking
Associated Data: Clinical
How You Can Access Samples
MTA: Yes
ethical committee approval for your biobank/biorepository: Yes
Context of samples used: Research; Diagnosis
CHU Dumont Biobank
Contact: Stéphanie Crapoulet; Biobank Senior research coordinator (manager/lead); ; 506-862-4221
Host Institution: Dr. Georges-L.-Dumont University Hospital Center; 330, Université Avenue; Moncton; New Brunswick; E1C 2Z3
What we Have
NMDs: Motor neuron disease (SMA/ALS); Myopathies/muscular dystrophies; Mitochondrial NMDs
Samples collected: Whole blood; Tissue; Saliva
Context of samples collected: Research; Biobanking
Associated Data: Clinical; Molecular
How You Can Access Samples
MTA: Yes
Access Requirement: REB approval and scientific oversight committee approval
Ethical Committee Approval: 25 May, 2017
Context of samples used: Research; Biobanking
Summary
The CHU Dumont biobank is an umbrella biobank, founded in 2017 with the pilot approved for the Tumoral branch, with the Neuro branch gaining approval in 2019. The biobank is located at the Dr. Georges-L.-Dumont University Hospital Center in Moncton, NB. The biobank collects tissue and saliva samples from patients with Motor Neuron disease, myopathies and muscular dystrophies, and mitochondrial NMDs.
CREATION
Contact: Dr. Cynthia Gagnon; Professor; ; 418-695-7700 #2756
Host Institution: CIUSSS du Saguenay-Lac-St-Jean; Chicoutimi, Québec, G7H5W4
What we Have
NMDs: Myopathies/muscular dystrophies; ARSACS; OPMD
Samples collected: Whole blood; Cells; Tissue (muscle); Urine; Saliva;
Context of samples collected: Longitudinal studies in ARSACS, OPMD and DM1
Samples prepared: Paraffin-embedded tissue; Plasma; Serum; Buffy coat to prepare DNA and RNA
Associated Data: Clinical; Molecular
How You Can Access Samples
Restriction on access: no but we have an access policy.
MTA: Yes.
Do you have an ethical committee approval for your biobank/biorepository: Yes
Context of samples used: Research; Therapeutics
Summary
The Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN) has launched in 2017 the CREATION Biobank:Â Clinicians, Researchers and Expert patients Alliance for Therapeutic Innovation on Neuromuscular disorders. The CREATION Biobank was created to allow researchers and clinicians worldwide to access large databases of phenotypic variables and associated biological samples to propose new research questions and foster collaborative projects with the GRIMN. The CREATION Biobank is a unique structure to foster research collaborations on neuromuscular disorders. The biobank has been developed with the idea of sharing datasets and biological samples from previous research projects conducted by the GRIMN and its partners.
Neurobiobank
Contact: Dr. Mathieu Blais, Project Manager;
PI : Dr Nicolas Dupré
Website: Not available at this time
Host Institution: CHU de Québec - Université Laval
What we Have
NMDs: Motor neuron disease (ALS); Ataxias;
Samples collected: Cells (skin cells, iPS cells derived for PBMC); Tissue
Context of samples collected: Research; Biobanking
Samples prepared: Cells; Frozen brain tissues
Context of samples used: Research
Associated Data: TBD
How You Can Access Samples
Access Requirement: To become a collaborator
Summary
Founded in 2005, the Neurobiobank is located at the CHU Québec. The biobank collects cells and tissue samples for Motor neuron disease and ataxias.
Pfeffer Lab Biobank
Contact: Dr. Gerald Pfeffer MD PhD; Assistant Professor; ; 403-210-3926
Website: https://hbi.ucalgary.ca/profiles/dr-gerald-pfeffer
Host Institution: Hotchkiss Brain Institute; 3330 Hospital Drive NW ; Calgary; Alberta; T2N 4N1
Biological Resources
NMDs: Motor neuron disease (SMA/ALS); Peripheral neuropathies (CMT); NMJ disorders (MG/CMS); Myopathies/muscular dystrophies; Mitochondrial NMDs
Samples collected: Whole Blood, Serum, Primary Fibroblasts, Muscle Tissue, Oral Microbiome
Context of samples collected: Research
Associated Data: Clinical; Molecular; Imaging
Sample Accessibility
Context of samples used: Research
Summary:
Founded in 2016, the Pfeffer lab biobank is located within the Hotchkiss Brain Institute at the University of Calgary. The biobank serves its regional population, and collects whole blood, serum, primary fibroblasts, muscle tissue, and oral microbiome samples spanning a broad array of NMDs.