The Neuromuscular Disease Network for Canada

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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)

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

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

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)

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

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

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:  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

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

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.