Autism BrainNet and The Douglas-Bell Canada Brain Bank

The Douglas-Bell Canada Brain Bank (DBCBB) is a network site of Autism BrainNet that allows Canadian individuals and families the opportunity to consider making a postmortem brain donation to help advance autism research.

Autism BrainNet is a program of the Simons Foundation Autism Research Initiative (SFARI) that facilitates high-quality research on donated postmortem brain tissue research to better understand the biological causes of autism and related neurodevelopmental conditions.

In addition to the site at DBCBB, Autism BrainNet includes three collection sites, also called nodes, in the United States and one in Oxford, England at the Oxford Brain Bank.

Each node follows the high standards set by Autism BrainNet to collect, process, store and distribute the precious gift of donated brain tissue to qualified researchers worldwide.

Who can become a brain donor for Autism BrainNet in Canada?

Autism BrainNet accepts postmortem brain donation from individuals who live in Canada and meet the following criteria:

• Individuals of any age who have a diagnosis or suspected diagnosis of autism.
• Individuals without a diagnosis of autism but with a genetic diagnosis included in the SPARK gene list that confers a high risk of autism.
• Individuals (up to 50 years of age) who do not have a diagnosis of autism or known serious neurologic or psychiatric condition. This is because researchers need to compare individuals with and without autism to identify the brain changes associated with autism.

How do I make a brain donation at the Douglas-Bell Canada Brain Bank?

Autism BrainNet at the Douglas-Bell Canada Brain Bank makes the donation process as simple as possible for every family. Donor families are treated with respect and compassion and provided with ongoing support.
Here are the steps for making a brain donation to the Douglas-Bell Canada Brain Bank:

1. When death is near or has occurred, call the Douglas-Bell Canada Brain Bank toll-free at 1-866-930-0291 or at 514-761-6131 (ext. 3496) Monday-Friday from 9 am to 5 pm.
   Call 1-877-333-0999 on Saturday and Sunday, or at any other time for immediate assistance. Our staff will walk your family through the donation process.
2. Read and sign the consent forms for brain donation and send the documents to the Douglas-Bell Canada Brain Bank, as instructed on the forms.
3. The Douglas-Bell Canada Brain Bank will coordinate retrieval of the brain and transport it safely to the brain bank.
4. An Autism BrainNet clinician will follow up with the donor family to learn more about the donor.

Autism BrainNet’s staff can be contacted anytime to answer questions or concerns after the brain donation process.

Becoming a brain donor

If you would like to become a brain donor, it is important to let your family know. Talking with family members about brain donation is a key aspect of long-term planning. These discussions are much less stressful when they occur in advance and minimize the burden of decision-making at the time of death. Long-term planning will also help ensure that a donor’s decision is respected.

You and your family can download and print the Intent to Donate Form and include it in healthcare directive or preplanning documents, provide it to the funeral home and share it with your family.
You can also download and print the Autism BrainNet Brain Donor Card. It is recommended that you also inform your attorney, clergy, and healthcare provider of your intent to donate to Autism BrainNet.

Most organ donation registries do not include brain donation. This is because donated brain tissue can only be used for research purposes and not transplantation. Autism BrainNet donors can also be organ donors. Autism BrainNet encourages organ donation to save lives whenever possible. However, Autism BrainNet does not accept whole-body donations.

While the goal of Autism BrainNet is to accommodate all interested donors, if the health status of a particular donor does not meet Autism BrainNet’s inclusion criteria, we will assist families in exploring other brain donation programs.

There is no cost associated when making a donation to Autism BrainNet.

Brain donation does not interfere with autopsy or funeral plans, including having an open-casket viewing, or with other traditional religious funeral arrangements.

Why is it important to study the brain to understand autism and related neurodevelopmental conditions?

There is still much to learn about how the human brain works and the differences in how the brain of a person who has autism or a related neurodevelopmental condition works.
Scientists can study the living human brain by using neuroimaging techniques such as magnetic resonance imaging (MRI) and electroencephalography (EEG). But these methods do not allow seeing the individual brain cells that form the brain tissue or studying the molecules that signal how these cells develop and function. Neuroimaging techniques do not give scientists enough information to understand how genetic changes affect brain tissue at the microscopic level. Thus, it is extremely important to examine the postmortem human brain to study individual brain cells, as well as molecular pathways and patterns of gene activity.

One further challenge of studying the autism brain is that autism is a very complex condition. Hundreds of genes have been associated with autism, and many different clinical manifestations have been observed. The only way to understand this genetic and behavioral diversity is to examine a large number of cases. However, brain donations are needed to advance this research
No pharmacological intervention is currently available to address the core symptoms associated with autism. Through a better understanding of the changes in brain tissue, autism researchers may help identify targets for new treatments that could improve the quality of life of individuals with autism and their families.

How is donated brain tissue used?

Autism BrainNet follows high standards to collect, process, store and distribute the precious gift of donated brain tissue to qualified autism researchers worldwide. All decisions concerning the distribution of brain tissue are made with the advice of an independent Scientific Review Committee that evaluates each researcher’s application based on its scientific quality, relevance, adherence to the mission of Autism BrainNet and potential for significantly advancing science to improve the lives of people with ASD.

How is donor information protected?

Autism BrainNet is evaluated and approved by an Institutional Review Board (IRB). An IRB, also known as an Independent Ethics Committee (IEC) or Ethical Review Board (ERB), is an external, independent committee that approves, monitors and reviews biomedical and behavioral research involving humans to protect the rights and welfare of the research participants. An IRB performs critical oversight functions for research conducted on human study participants that are scientific, ethical, and regulatory. Autism BrainNet abides by all IRB rules and regulations to protect the rights and privacy of our donors and their families.

Autism BrainNet is committed to protecting the privacy of donors and their families. Research data and results are collected in a centralized database in accordance with United States privacy laws. All donor families’ contact information is protected and remains confidential to Autism BrainNet and is never shared. Approved researchers will be able to access ONLY DEIDENTIFIED relevant medical data obtained and provided to Autism BrainNet.