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.
Who performs the brain tissue procurement, and how do I locate them? 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.
Is there a cost associated with brain donation? 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.
5
How long does it take for my family to receive the neuropathology report? 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.
How will the brain tissue be used? And will my identity be kept confidential? 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.