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Why is brain donation important to CADASIL research?

Although CADASIL can be detected in other parts of the body, it only causes noticeable effects in the brain. For this reason, it is crucial for researchers to study the brains of patients who have had CADASIL in order to develop better treatments and someday a cure for the disease. However, the brain of a living person can only be studied with imaging techniques like MRI. Researchers therefore rely on donated brains to investigate how CADASIL affects the physical functioning of the brain.

Who can donate?

Any current or past patients or research participants at the Memory & Aging Program are welcome to donate.

What should I consider when deciding to donate?

It is important to discuss your wishes with your family members and to include them in your decision-making process. You should also ask your doctor any questions you have when deciding to enroll or after enrolling. It is always your decision whether or not to donate your brain.

Is brain donation compatible with my religious beliefs?

This is an important question to many potential donors and their families. Most religions allow and even encourage donation of the brain and other organs for research, but you may wish to discuss your decision or questions about brain donation with your religious leader. Click here for a list of statements from various religions on tissue donation, .

What do I do if I decide to enroll?

If you choose to donate your brain, you must notify the Memory and Aging Program as well as your home doctor. You will fill out some forms stating your wishes. Your family members will also receive information on whom to contact at the time of your passing. It is important to make plans in advance because families have other important concerns to deal with at the time of a loved one's passing.

Who can give permission?

In most cases, the law lets a person give consent for autopsy (including brain autopsy) while still alive and also authorizes close relations to do so after death or if a person becomes incompetent.

What happens at the time of donation?

Your family must notify us of your death shortly beforehand or within two hours after. Your body will then be taken to Rhode Island Hospital and the brain will be removed. Afterwards your body will be brought back to the funeral home.

What if I don't live in or near Rhode Island?

If you live out of state, the brain will be removed at your local hospital and delivered to Rhode Island Hospital. It is important to discuss your plans with us and with your hospital ahead of time to make sure that the process will run smoothly.

Can I have an open casket funeral?

Absolutely. The brain is removed in such a way that your face and hair will not be affected. Funeral directors and morticians are familiar with the process and will know what to do to make you look your best.

Will brain donation be helpful to my family?

Your family will receive a written report on your autopsy. The report tells the diagnosis, summarizes other findings, and includes a number to call if there are any questions.

Is there any cost?

The autopsy is free, but certain transportation charges may apply.


Click here to download our general brochure on brain donation (not specific to CADASIL).