I want to participate | I am a participant
What is the Open Biobank?
The Open Biobank at The Neuro collects biological samples —like blood or tissue—and health information, from people with neurological conditions and from healthy volunteers.
Researchers around the world use the biobank to develop new treatments and better understand diseases such as:
- ALS (Lou Gehrig’s disease)
- Multiple sclerosis (MS)
- Parkinson’s disease
- Autism and intellectual disabilities
- And many rare neurological disorders and neuromuscular disorders
Researchers can access not just biological specimens, but also clinical data like diagnoses and cognitive tests results, imaging such as brain scans (MRIs), or genetic information.
The Neuro’s Open Biobank is available to researchers around the world:
- 105+ academic and industry partners are already using the biobank’s resources, including teams from: Harvard University, University of Oxford, University of Toronto, University of Montreal, Merck, Takeda, Genentech, Promega
The Neuro's Open Biobank is a key resource for major pan-Canadian research initiatives such as:
- Capture-ALS (ALS), Canadian Open Parkinson Network (Parkinson), DEMySTIFI (Multiple Sclerosis), Q1K (Autism), Montreal-Paris Neurobank project (brain imaging data)
Why participate?
When you contribute your data or samples, you contribute to discoveries that benefit patients and families everywhere.
By combining biological samples with clinical data, brain imaging and genetic information, the Neuro Open Biobank helps researchers around the world:
- Understand how neurological diseases develop
- Improve diagnosis and treatments
- Work toward personalized medicine—treatments tailored to each person’s unique biology
- Accelerate the pace of research through Open Science
Who can participate?
Anyone. We welcome:
- People diagnosed with neurological conditions
- Healthy volunteers whose data are equally valuable
- Minors can donate with parent and/or guardian consent
- Posthumous donors who can make a lasting impact on future generations
All information is de-identified.
How to participate
Want to help advance neurological research? Join as a participant — patients, healthy volunteers and posthumous donors are all welcome.
I WANT TO PARTICIPATE OR LEARN MORE
- Participation is entirely voluntary
- Participants sign the Open Biobank informed consent form
- Consent can be withdrawn at any time
Every sample contributed and each piece of clinical information are pieces of the puzzle. The more pieces we have, the clearer the picture becomes.
- Donate samples: blood, saliva, or other types of biological material
- Share your clinical data: health information, imaging, or genetic results
Still have questions? Email: openbiobank.neuro [at] mcgill.ca
How You Can Help
Want to help advance neurological research? Join as a participant — patients, healthy volunteers and posthumous donors are all welcome.
- Donate samples: blood, saliva, or other types of biological material
- Share your clinical data: health information, imaging, or genetic results
Why join?
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 samples, they contribute to a better understanding of neurological disorders.
- Contribute to research that could improve diagnosis and treatments
- Your samples help develop therapies and biomarkers
- Privacy: all data are de identified
I WANT TO PARTICIPATE OR LEARN MORE
FAQ
How is my data protected?
Participant privacy is our priority
- All data shared with researchers is de-identified and coded.
- Open Biobank personnel don’t have access to sensitive patient data except at the time of consent.
- All projects using controlled Open Biobank data or biological samples must be approved by the Tissue and Data Committee before any information is released.
Can I withdraw consent if I change my mind?
Yes. Participation is entirely voluntary and can be withdrawn at any time with absolutely no impact on a patient’s clinical care.
If you elect to withdraw your participation:
- Materials collected that remain in the biobank will be destroyed as per current laboratory protocols.
- Samples or data that may have already been released for research at the time of the withdrawal request or any information generated may be unable to destroy
I have more questions. Who do I contact?
Please send us an email: openbiobank.neuro [at] mcgill.ca We are happy to answer any further questions.
