I'M A PARTICIPANT
How to get involved
Anyone can participate in the听Open Biobank.
We accept clinical data, biological samples, and radiological (imaging) data from both patients with neurological disorders as well as healthy volunteers. Participation is entirely voluntary and consent can be withdrawn at any time.
Data Security
We take participant privacy extremely seriously.
All projects using controlled Open Biobank's data or bio-specimens must be approved by the Tissue and Data Committee before any information is released. All data shared with researchers is de-identified and coded, which means that there is no identifiable patient information distributed. Even Open Biobank's personnel don鈥檛 have access to sensitive patient data except at the time of consent.
FAQ
Am I eligible to participate?
Everyone is eligible to participate in the Open Biobank. We welcome participation from both healthy volunteers and patients diagnosed with a neurological disease. Minors can donate with parent and/or guardian consent. Samples and data can now also be donated posthumously.听听
How do I participate?
Please contact cbig.mni [at] mcgill.ca (The Neuro) at (cbig.mni [at] mcgill.ca) to set up an appointment.听All participants must sign the Open Biobank informed consent form. Please note that participation is entirely voluntary, and consent can be withdrawn anytime.听
Why should I give the Open Biobank my data?
The Open Biobank is a tool to help advance treatment development for neurological disorders, with the goal of improving patient care. When participants donate their data and/or samples to the Open Biobank, they contribute to a better understanding of neurological disorders and enable researchers to Identify patients that are eligible for precision clinical trials. The Open Biobank enables research to translate directly back to clinicians and their treatment plans for patients.听
What research is my data used for?
The Open Biobank is involved in more than 45 research collaborations with industry leaders, biotech startups, and academic partners. It is also the main database for pan-Canadian neuroscience initiatives in ALS, MS, Parkinson鈥檚, Neuromuscular diseases, Autism and Intellectual disabilities. The goal of all these partnerships is to advance treatment development for neurological disorders and improve patient care, for example through precision clinical trials.听
All projects using Open Biobank data must be approved by the Tissue and Data Committee before any information is released.听
Click here for the full list of collaborators. 听
How is my data protected?
All data shared with researchers is de-identified, which means that there is no way to retrieve participants' identities. Even the Open Biobank's听employees don鈥檛 have access to patient data except for their diagnosis (when applicable), sex, and date of birth.
Can I withdraw consent if I change my mind?
Yes. Patient participation in the Open Biobank听is entirely voluntary. Participants may withdraw from any study at any time and are not required to provide any reason for their decision. Withdrawing from a study will have absolutely no impact on a patient鈥檚 clinical care. If a patient elects to withdraw, any materials collected that remain in the biobank will be destroyed by the hospital as per current laboratory protocols. The Open Biobank may be unable to destroy materials that may have already been released for research at the time of the withdrawal request or any information generated from previously distributed samples.听
I have more questions. Who do I contact?
Please send us an email: cbig.mni [at] mcgill.ca We are happy to answer any further questions.听
