What is the difference between brain donation and brain autopsy?
A brain autopsy is not usually used for research; it is a post-death analysis of the brain to establish a definitive diagnosis. While that step can provide helpful guidance to you and your family, it will not otherwise benefit FTD research.
By volunteering for brain donation, you can get a definitive diagnosis, while also making a profound contribution to FTD research. Brain tissue from both persons with and without an FTD diagnosis can help scientists develop treatments and diagnostic tools targeting the microscopic pathology that causes FTD.
What are the steps for brain donation?
Determining which donation program to use and planning for potential costs can be challenging for families, particularly if the potential brain donor was not enrolled in a research study during life. Planning ahead – and making key decisions as early as possible – is critical. We outline nine steps in a typical brain donation process below:
Step 1: Determine what brain donation program is right for you
This is meant to be a guide; each option may have a slightly different process and you should always discuss potential costs with any program you choose.
- People diagnosed with FTD can enroll in ALLFTD, a cost-free observational study through which researchers simply observe and document naturally occurring changes in health, behavior, and cognitive abilities over time. Once you or a loved one are accepted into this study, ALLFTD staff will discuss brain donation, the overall process, and the benefits to FTD research through your donation. Visit allftd.org to learn more.
- Ask your clinical team if they facilitate brain donation. If you cannot enroll in a research study, speak to your clinical team to find out if they offer brain donation. This can be another way to match your clinical records with what pathologists can learn from your brain tissue.
- People who aren’t enrolled in research can still take part in brain donation. Two nonprofit organizations help families fill out the paperwork, arrange logistics, provide resources, and can answer your questions about brain donation:
AFTD recommends that families make decisions about brain donation early. If you have limited time to complete a brain donation application, call the Brain Donor Project or the Brain Support Network after you complete the initial paperwork on their website.
Step 2: Enroll in a brain donation program.
Depending on the program, you will need to complete an intent-to-donate form and provide contact information to facilitate the process.
Step 3: Designate a representative.
Talk to your family about this decision. Designate a family member or other representative to be contacted at the time of death. Their consent is needed on the donation form.
Step 4: At the time of death, notify the center as quickly as possible.
At the time of death, the donor’s representative should contact the center immediately, ideally within two hours, so that the donation process can provide the most value to research.
Step 5: Arranging the donation procedure.
The donation program will assist in making arrangements with the pathologist, often in conjunction with the funeral home. The pathologist will complete the procedure within 24 hours after death. Grants are sometimes available for families to subsidize potential costs, such as transportation.
Step 6: Brain donation.
Typically, the whole brain is donated. Brain removal does not disfigure the body and should not delay or complicate funeral plans. Half the tissue is prepared for microscopic analysis, and half is preserved for future research in a centralized repository called a brain bank. Brain banks allow brain researchers from around the world to request brain tissue to assist in their vital work. Most studies are conducted on a very small amount of tissue, so each donated brain can benefit multiple research studies.
Step 7: The body is returned to the family.
The body is returned to the family for burial or cremation and related ceremonies.
Step 8: Families receive a report of findings.
Typically, within three to nine months after the donation, donor families receive a report of the findings.
In some cases, the report provides unexpected results, such as when pathology does not match the clinical diagnosis. While this can be jarring, know that it can teach us how many different pathologies can cause FTD or FTD symptoms. The neuropathology report does not include genetic information. Such information should be obtained through genetic counseling (and considering genetic testing) while the diagnosed person is alive. Click here for more information.
You can discuss the report with a neurologist, to help interpret what are often highly detailed findings. Additionally, the AFTD HelpLine can assist with questions that may arise from the results (1-866-507-7222 or [email protected]).
Step 9: Brain tissue becomes available to researchers.
The brain tissue becomes available to qualified scientists, who can now advance critical research.
Will brain donation reveal if my FTD is genetic?
Genetic testing is not typically part of brain donation. If genetic testing is not done during life, the option for future genetic testing can be preserved by storing a DNA sample in a designated facility; a process known as DNA banking. Seeking more information from your treating neurologist and a genetic counselor can help you understand the risk of having familial FTD and guide the decision process to seek genetic testing. Click here for additional information on DNA banking.