Once a family has decided to move forward, it is important to set up a brain donation as far in advance as possible. Plans can be made months or even several years before someone is in more advanced stages of disease or approaching end of life. Sometimes, a family will choose brain donation as the person is in the final stages of the disease process when death is imminent, and this time frame can cause stress and logistical complications during an already emotional time. There are several reasons why it is best to plan brain donation as early as possible:

• It is ideal if the person with the neurodegenerative disorder is involved in the decision to donate their brain. Because of possible changes to cognition and speech, this can be more challenging
  as the disease progresses. Therefore, we recommend discussing brain donation with your partner or other family members to let them know of your interest and to participate in the decision and the process.

• An essential part of the donation process is identifying a person or agency to perform the procedure to collect the brain tissue, referred to as the “brain tissue procurement,” and shipment of the brain tissue to the brain bank. The neuropathology program coordinator at the Mayo Clinic Brain Bank can provide you with options for pathologists they have worked with in the past, but it is still important to confirm that the person is able and willing to do the procedure and to talk through the process, preparation, and possible cost ahead of time.

• There are several other steps to setting up a brain donation, including sending paperwork to the brain bank beforehand and arranging transportation and other services after the brain donation is complete (e.g., body donation, cremation, funeral service).

• Medical records are essential in interpreting brain findings by the brain bank neuropathologist. Therefore, as early as possible, the medical records release form (page 12) should be sent to the physicians who have evaluated the patient. This could include a neurologist, psychologist, or radiologist. Either hard copies or digital copies of the records are acceptable and should be sent to the brain bank.

• When someone passes away, there is a short time frame in which the brain tissue needs to be removed. Ideally, this time frame is 12–24 hours, but up to 48 hours is acceptable if a body has been kept in cold storage. This process takes coordination between the family, hospice (if hospice is involved), the mortuary service, and the pathologist and can be more complicated if someone passes away in the middle of the night or over a weekend or holiday.

These steps can take time and can bring up a number of questions; however, once they have
been completed, patients and families have the peace of mind that the process is in place. The prearrangements are not legally binding, and the family can always change their mind at any point and for any reason. The family can then focus their time and energy on care, emotional health, relationships, and other needs. For these reasons, it is important to talk about, decide on, and set up brain donation early.

Legally, the patient and/or healthcare power of attorney/next of kin can sign the Autopsy & Research Consent Form (page 13). If the patient does not have a spouse, the oldest child is considered next of kin, followed by the next closest blood relative. If there are no blood relatives, a witness can sign the form and must note the relationship. The patient or healthcare power of attorney/next of kin may sign the consent form prior to death, but in most circumstances, it is not legally binding and often requires confirmation (verbal or written) after death. You may wish to research your local state laws on these details. The person performing the brain tissue procurement may require their own additional consent/authorization documentation.

Currently, brain tissue is most important for the pathological study of neurodegenerative diseases
and for providing a confirmed diagnosis to families. Still, some people who donate their brains also choose to donate other parts of the body (for example, spinal cord or even the entire body). This type
of donation would need to be set up through a different program, as CurePSP and Mayo Clinic are only able to support brain donation. Local medical schools and teaching hospitals or a program like the Anatomy Gifts Registry (www.anatomygifts.org) can often offer body donation programs and assist with the process. Some body donation programs will not take a body if a brain has been removed, and we recommend inquiring about program details, as well as other eligibility criteria and steps for body donation, if it is something you are considering.

Note that the donation of brains to science is different from organ donation, which is for the donation of healthy organs to be used in living people (organ transplants). You can be an organ donor, if you and your organs would be eligible for donation and use at the time, and then still donate your brain to science. The logistics for donating both your organs and your brain are more complicated, and we recommend discussing these plans with your family and healthcare team.

Brain banks are also in need of healthy brains to serve as valuable control brains in research studies.
It is very important to compare pathological changes in diseased brains with healthy brains. It helps scientists to better understand disease processes and to develop novel therapeutic strategies. Please contact the Mayo Clinic Brain Bank for more information on healthy brain donation. There are other programs that will take donations of healthy control brains, including the Brain Donor Project through the National Institutes of Health. Please note that, at this time, CurePSP cannot provide financial assistance for the donation of healthy brains.

In most cases, only on very close inspection would anyone notice that a brain tissue donation has been performed. The exception would be if the person is bald, but most funeral directors have the skills to cosmetically conceal the incision in the scalp. In most cases, the family can have an open casket service and those viewing the body would not be able to see the scalp incision.

If someone passes away in a hospital and if the attending physician has ordered the procedure, then the tissue collection will likely be performed in that hospital. Many people die in their home or in a hospice or long-term care facility. If that is the case, the person’s body will need to be transported to the place where the brain tissue removal will occur. This location depends on who you have set up to perform the tissue procurement and may be at a hospital, medical examiner office, funeral home, or other mortuary service. This means that you will also have to arrange for body transportation through a funeral home or mortuary transportation company.

A pathologist or diener (someone who works with or assists pathologists) will collect the brain
tissue and ship it. Please contact the Mayo Clinic neuropathology program coordinator, Rachel LaPaille-Harwood, at 904-953-2439 or lapaille-harwood.rachel@mayo.edu. The Brain Bank maintains a list of pathologists and dieners in the U.S. and parts of Canada with whom they have worked in the past. You can also ask a funeral director or the patient’s neurologist if they can recommend someone, or directly contact the pathology department at your nearby hospital or the medical examiner/ coroner to see if they would be able and willing to perform the tissue procurement. Currently, CurePSP is unable to assist in this step of the process.

The Mayo Clinic Brain Bank does not charge for neuropathologic evaluation, including generating
a neuropathology report. However, it is possible that the pathologist or diener will charge for their services in removing, preparing, and shipping the brain tissue. This cost typically ranges from $500 to $2,000 and is the responsibility of the family. Additionally, a funeral home or mortuary service may impose a fee for transportation of the deceased and/or for the provision of cold storage (in addition to other services you may choose to hire them for, such as embalming, cremation, or burial).

At CurePSP, we recognize that the expenses of brain donation can be prohibitive for some families. Because of this, and thanks to the generosity of many individual supporters, CurePSP is able to offer reimbursement up to $1,000 for expenses incurred related to brain donation (e.g., pathologist/diener fee, fees for cold storage/facility/transportation for the purposes of brain donation). If you have questions related to reimbursement of brain donation expenses, please contact Joanna Teters at 347-294-2871 or teters@curepsp.org.

Please allow two to four months from the time the Mayo Clinic Brain Bank has received the tissue and the patient’s medical records. The final report is sent to the person who did the brain tissue procurement, and a copy is mailed to the person who had legal authority to grant the brain donation, most often the next of kin. This information, including mailing address, should be provided on the CurePSP brain bank questionnaire.

The Mayo Clinic Brain Bank collaborates with many national and international scientists who
use human brain tissue as part of their research. The brain bank does not require payment from researchers to whom it supplies brain tissue. Researchers use brain tissue to understand the pathology of neurodegenerative disorders and their relationship to clinical features. Sometimes brain tissue is accompanied by clinical information in which the patient’s identity has been withheld. The clinical information that researchers receive is from notes sent from the neurologist as well as from information you supply in the brain donation form. The name of the donor and any other identifying information is not shared outside of the brain bank or in any resulting publications.