Frequently Asked Questions: Brain Donation
Do I need to pre-register for brain donation?
Yes, but we can only accept registration from individuals who have been assessed at our clinic. The Institute for Brain Aging and Dementia Tissue Repository will make all the arrangements pertaining to the donation procedure. We regret that we cannot accept cases for which we do not have prior registration.
What do I need to do if I want to donate my brain?
To be a participant in the brain donation program it is critical that you be enrolled in one of our clinic programs. After you have completed an assessment at the Institute's Clinic, he or she is eligible for participation in the Tissue Donation Program. The decision to donate from dementia patients has to be made prior to death. We cannot accept donations from dementia patients who have not been assessed at our Clinic and who have not pre-enrolled in the donation program. We do make exceptions to the pre-registration rule when the cause of dementia is due to a very rare disease (e.g., Picks disease, Lewy body disease or Fronto-Temporal dementia, Down Syndrome), but unfortunately what we can learn from these cases is more limited since we will not have the in-depth clinical data.
When donating, is the entire brain removed?
Yes. The donation process requires the most information about the brain as possible, so the entire organ will be removed from the skull.
If I donate my brain can I still have an open casket funeral?
Yes. If you are concerned about this, please mention this preference to our repository staff members on call. There will be virtually no indication that a brain donation procedure was completed.
Is Tissue Donation compatible with my religion?
Tissue donation for medical diagnosis and to promote research to the betterment of mankind is compatible with nearly all religions. If you are still concerned about donation and your religious faith, we suggest discussing this issue with your spiritual leaders.
How long does the brain removal process take?
We understand and sympathize with families during this stressful time and will do our very best to carry out the brain donation as quickly as possible. If you have any questions during this time, feel free to contact our staff who will do everything possible to help.
How soon should I call after the donor has passed away?
We have a 24-hour paging system for tissue donation which is active 7 days a week, even during holidays, and it is essential to the procedure that we be contacted immediately at the time of death. We will make all the arrangements pertaining to the donation procedure.
How does transportation work?
If the donor has passed away at home, the repository staff will request that you contact the coroner's office (they will provide you with that number) first. The coroner's office will visit the home and assign a case number to the donor. The repository will need this number in order to arrange transportation. Once the coroner number has been assigned and/or the family is ready to release the body, the repository will arrange for transportation. The body will be transported to the University of California Irvine, Medical Center where the tissue harvesting procedure will take place. Once this is completed the body will be transported directly to the indicated funeral home or mortuary. Essentially the same applies if someone passes away in the hospital or in hospice. If this happens, we hope that either the family or someone at the facility will page us immediately. We can pick up the body directly from the facility and transport the individual to UCIMC for the procedure. After this is done, we will contact the mortuary to pick up the deceased. As with the case when someone passes away at home - typical mortuary arrangements include one-way transportation. The cost for transportation from UCIMC to the mortuary is to be covered by the family.
How long before I get results of autopsy?
The autopsy process is a long careful process. After the neuropathologist collects specific brain areas for analysis the pieces are sectioned very thinly and stained to reveal pathology (abnormalities, or deviations from normal brain structures). This complicated procedure can take up to several months.
Are there any additional costs?
There is no cost to the patient or the family for participation in this program. The family is required to cover the cost of one-way transportation of the body to the mortuary after brain donation has occurred, but this would be a normal expense for the family.
How can I get extra donor cards?
Contact the UCI Assessment Center at 949-824-2382 if you need more donor cards.
I have already signed the "Donor Card" on my driver's license, isn't that enough?
No. Even though you may have signed the donor card that comes with your driver's license, this does not give us permission to receive your brain. A state of California donor card is for the removal of transplantable organs at the time of death, such as the heart or kidneys. Also, there is no mechanism for the state to contact us at the time of death. Therefore, you need to be pre-enrolled in our brain donation program in order for us to obtain the proper paperwork and receive a timely notification of death.
Once enrolled in the program, can we decide not to participate at any time?
Yes. If a caregiver, family or participant in our program decides to withdraw from the program then there are two options. One is to call or write to the UCI Assessment Center and request withdrawal from the tissue donation program. Another option is to not contact the Brain Donation program at the time of death. We will never proceed with a donation if the family has changed their mind.
