Brain Donor Project & NeuroBioBank

What is Brain Donation?

Brain donation is a process that allows people to donate their brain for dedicated neurologic and psychiatric research, following their passing.

Supporting Future ALS Research

The brain (and spinal cord) is the most valuable tissue for ALS research because it contains motor neurons, which are the cells that are directly impacted by ALS. Therefore, brain donation provides researchers with the critical opportunity to study the affected tissue and conduct research that can lead to significant discoveries in ALS drug and treatment development.

ALL ALS Participation & Brain Donation

ALL ALS participants that chose to donate their brain to NeuroBioBank [a network of brain banks run by the National Institutes of Health (NIH)] can have their ALL ALS data and biosamples linked to their future brain donation, which can amplify the impact of each individual dataset and expand opportunities for potential research and scientific breakthroughs.

Brain donation is an optional opportunity for ALL ALS participants and is not a requirement for study participation. Note: ALL ALS does not operate, manage, or control any aspect of brain donation. ALL ALS collaborates with the Brain Donor Project and NeuroBioBank to ensure linkage between datasets, but ALL ALS, the Brain Donor Project, and NeuroBioBank are separate entities.

Learn more about brain donation and share resources with your family and loved ones:

About the Brain Donor Project

The Brain Donor Project acts as a liaison between prospective donators and NeuroBioBank, the network of brain banks run by the NIH that manage tissue storage and sharing. Individuals who are interested in learning more about brain donation can complete a simple, online pre-registration form on the Brain Donor Project website.

The Brain Donor Project website also provides:

In-depth information about brain donation
An educational video
Answers to frequently asked questions
Phone and email support

How to Pre-Register as an ALL ALS Participant

Pre-registration lets the Brain Donor Project know that you are interested in learning more about brain donation.

Please Note: Pre-registration is not official consent for brain donation. It simply indicates that you would like the Brain Donor Project to contact you with additional information.

Step 1: Visit the Brain Donor Project and click “Pre-Register Here.”

Step 2: Complete the first few questions.

Step 3: On the “Have you participated in any clinical trials” question, select “Yes”.

Step 4: When prompted, input the following clinical trial information:

Name of Trial: ALL ALS
Participant ID: (if known)
Trial Location: The name or city/state of our ALL ALS study site (ex. Massachusetts General Hospital or Boston, MA)
Administrator Email and Phone: Your site investigator contact

Step 5: Complete the remainder of the form and submit.

Step 6: After submitting the form, you will receive an email with the subject: “Brain Donation Next Steps”

Follow the instructions provided in the email to complete your registration. If you do not see the email, be sure to check your junk or spam folder.

Need Additional Assistance?

If you have questions about the pre-registration process or need help locating your Participant ID or study information, please contact your ALL ALS study team.

For additional information about brain donation, including educational resources and frequently asked questions, visit the Brain Donor Project website.