Participating in the Florida Brain Bank

Posted on

Oct 31, 2019

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The Florida Brain Bank is a state funded, autopsy research program with the goal of finding a cure for Alzheimers disease and other related dementias. The brain bank program originated in 1985 by the Alzheimers & Dementia Resource Centers (ADRC) founder, Pat Jimison, in partnership with Dr. Gary Pearl of Orlando Regional Medical Center. Together they launched a brain donation research program that went on to inspire the State of Florida to expand the program through the states Alzheimers Disease Initiative (ADI).
Mt. Sinai, in Miami is the primary research center for the State of Florida Brain Bank. Through ADRCs partnership withMount Sinai Medical Center, we have becomethe major contributor to the Florida Brain Bank program. We are one of only two program entry points to the program which covers the entire state.ADRCs autopsy coordination and facilitation of brain donations encompasses 21 central Florida counties. The remaining counties are covered by Mt. Sinai.
Paired with ADRCs support and one-on-one relationship with the caregiver and study participant, the Brain Bank program helps provide hope for the family and the future. Participation in the Brain Bank Research program provides a comprehensive written neuropathology report to the family that will explain in detail the diagnoses that were present in the participating family member. The comprehensive neuropathology report serves as a valuable tool for the family, and for the physicians who were working with the participant. Working with ADRC and the Brain Bank better prepares the family of the participant for the future and encourages them to understand the role lifestyle choice may have in reducing the potential risks for developing Alzheimers disease themselves. Knowing that their loved one has made a significantcontribution to the body of research seeking a cure forAlzheimers disease helps to bring a sense of purpose to the illness and provide closure during the difficult time of loss. The family can find comfort in knowing that the most precious gift givenby their loved one has gone on to help countless others.
Currently, a definitive diagnosis of Alzheimers disease can only be confirmed with 100% accuracy through an autopsy. It is important to note thatthe post-mortem examination of the brain will not determine the cause of death, but solely the diagnosis of the type of dementia, or dementias that were present.
Registration takes some time (plan on 6-8 weeks). All participants must be registered prior to time of death and must reside in the state of Florida at time of enrollment and at the time of death. There is no charge for participation in the study.
Minimum criteria for enrollment requires an initial diagnosis of Alzheimers Disease, or any other age-related dementia, that has been in place for a minimum of 12 months. Additionally, a complete neuropsychological evaluation, inclusive of brain imaging, must have been done. The evaluation and initial diagnosis must have been made by a neurologist, neuropsychiatrist, neuropsychiatrist, or medical director of an ADI-funded memory disorder clinic. A local funeral home that will be responsible for transportation must be selected prior to enrollment.
To learn more about the program and how to register, contact Edith Gendron at407-436-7752, Chief of Operations for ADRC.
This article was written by Edith Gendron, Chief of Operations for the Alzheimers and Dementia Resource Center. She can be reached at the number above.

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