More than 6% of the world population is affected by neurological disorders, with many affected by rare pathologies that do not yet have effective treatments.
A rare disease will typically affect 1 in 2,000 people or less and it is estimated that between 6,000 and 7,000 rare diseases have been identified to date.
With little information about these disorders, the study of rare disease cases is critically important to improving care and maximizing research efforts to advance the understanding of rare neurological disorders.
The Neuro’s C-BIG Repository is an Open Science collection of biological samples, clinical information, imaging and genetic data from people with neurological disorders as well as healthy research participants.
This robust collection drives researchers to develop key insights into the biology underlying neurological disorders, and facilitates the development of new and better treatments for patients and their families.
The data and samples collected will be made available to researchers around the world, in line with The Neuro's Open Science principles.
The Repository is also supported by a unique ethical framework that empowers people to voluntarily take part in research aimed at advancing our understanding of their own neurological diseases, reflecting Dr. Wilder Penfield's vision in founding The Neuro. It also recognizes the primacy of safeguarding the dignity and privacy of all participants, and respecting their rights and responsibilities through the informed consent process.
For more information, cbig.mni [at] mcgill.ca (email us).