CurePSP Brain Tissue Donation Program
Lawrence I. Golbe, MD
Supported by the Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic Jacksonville, Florida
CurePSP asks you to consider brain tissue donation when the clinical diagnosis is made. A brain bank at the Mayo Clinic in Jacksonville, Florida, one of the leading such facilities in the world, is supported in part by CurePSP, which provided the initial impetus for the brain bank’ s founding in 1998.
The final autopsy report from the brain bank provides the authoritative diagnosis as well as information about other brain changes that may exist, including those that may have contributed to a clinical misdiagnosis. The Brain Bank provides tissue samples to reputable scientists worldwide for investigation into the genetics and other aspects of the causes of neurodegeneration. Of course, the donor’ s name or other identifying information is removed before the tissue is shared outside of the Mayo Clinic.
After a few weeks, the next-of-kin will receive a comprehensive autopsy report that often offers closure after many years of suffering and caring for a loved one. The Brain Bank does not charge the family for its services. Neither does it require payment from researchers to whom it supplies brain tissue.
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Questions and Answers
Q. Why make your decision in advance?
A. For several reasons:
• Your loved one can die suddenly, which is extremely stressful. A decision may have been made to donate the brain; however, without making prior arrangements, it is possible that the donation will not occur. The 24- to 48-hour window to perform the brain donation after death cannot always be met on short notice, especially on weekends and holidays.
• The patient, family members, and other loved ones should be involved in the decision. It may take time for everyone to come to an agreement. The Brain Bank coordinator is available to answer any questions and assist in making the arrangements.
• It can be difficult to locate a pathologist to perform the tissue collection. It is most important to have someone lined up in advance to make sure this procedure is accomplished within 24 – 48 hours after death.
• It is helpful to talk with family and friends, as well as the funeral home, about the planned arrangements. Planning in advance and the support of others will help during the time of grief. In addition to the brain donation, securing your loved one’ s medical records in advance is a significant help to the pathologist conducting the examination. Medical records show the disease progression. Records can be correlated with autopsy results.