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What is the Open Biobank?ÌýÌý

The Clinical-Biological Imaging and Genetic Repository (the Open Biobank) is a combined patient registry andÌý Open Science collection of biospecimens and clinical information including neuro-psychiatric testing, imaging, and genetic data from patients with neurological diseases as well as healthy controls. It is a collaboration between patients, researchers, industry, and clinicians, with the goal of advancing treatment development and patient care through precision clinical trials and shared data. So far, more than 3,000 patients have donated their samples through (CRU) and other centres across the country.ÌýÌý

The Open Biobank is also the main database for pan-Canadian neuroscience initiatives in ALS, MS Parkinson’s, Neuromuscular diseases, Autism and Intellectual disabilities.Ìý

FAQ

What makes the Open Biobank so unique?

The Open Biobank is the only combined Open Science biobank repository and patient registry in the world. Driven by patient partnerships, the Open Biobank is involved in more than 45 scientific, public, and private collaborations with industry leaders, biotech startups, and academic partners. The database currently hosts and distributes more than 120 unique patient-derived cell lines including specific mutations and CRISPR-repaired control lines. All data are available to investigators around the world.ÌýÌý

What sort of data are stored in the Open Biobank?

In addition to a biospecimen inventory, clinical, imaging and genetic data are stored in the Open Biobank. All data stored in the Open Biobank are de-identified to protect the privacy of participants.Ìý

The Open Biobank biospecimen samples include:Ìý

  • Blood and derived products (e.g. plasma, RNA, serum, PBMCs)Ìý

  • Cerebrospinal fluidÌý

  • Brain tissue (including grey matter, white matter, deep grey, and spinal cord)Ìý

  • Skeletal muscleÌý

  • Peripheral nerveÌý

  • Stool and urineÌý

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Who can participate?

Anyone can participate in the Open Biobank project.ÌýÌý

  • I want to donate data/samples: we welcome participation from both healthy patients and those diagnosed with a neurological disease. Samples and data can now also be donated posthumously.ÌýÌý

Click here to learn more about donating samples, or cbig.mni [at] mcgill.ca (contact us) to set up an appointment at the Neuro.Ìý

  • I want to use the Open Biobank data, specimens or cell lines in my research: C-BIG data are available to anyone who needs material for building a study or project, around the world. The project will need to be approved by the Tissue and Data Committee before an Open Transfer Agreement can be issued.ÌýÌý

Click here to learn more about using the Open Biobank resources for research, or contact us at cbig.mni [at] mcgill.ca.Ìý

Who can use the Open Biobank data?

Anyone doing research in the neurological disease space can use the data. There is an ‘Open’ portal for those patients who have consented for Open Science, and a registered portal for sensitive information. We currently have users from academia, research institutions, and industry. All projects using controlled Open Biobank data or materials must be approved by the Tissue and Data Committee.Ìý

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Scientific Director

Jason Karamchandani, MD

Email: jason.karamchandani [at] mcgill.ca

jason k.

Neuro VIP manager

Jean-Robert Kwizera

Email: jean.robert.kwizera [at] mcgill.ca

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Staff

Marie-Noëlle Boivin, MSc

Email: marie-noelle.boivin [at] mcgill.ca

marie noel

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Research Administrator

Amina Boulid

Email: amina.boulid [at] mcgill.ca

Laboratory Technician

Peng Wang

Email: peng.wang3 [at] mcgill.ca

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Operations Manager

Nicolas Ferry

Email: nicolas.ferry [at] mcgill.ca

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Software Engineer

Kevin Lafleur

kevin lafleur, softwarre engineer

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The Neuro logoÌýƽÌØÎå²»ÖÐ logo

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The Neuro (Montreal Neurological Institute-Hospital)Ìýis a bilingual academic healthcare institution. We are aÌýƽÌØÎå²»ÖÐ research and teaching institute; delivering high-quality patient care, as part of the Neuroscience Mission of the ƽÌØÎå²»ÖÐ Health Centre.ÌýWe areÌýproud to be a Killam Institution, supported by the Killam Trusts.

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