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Banking brains: a pre-mortem “how to” guide to successful donation

  • Daniel Trujillo Diaz
  • Nora C. Hernandez
  • Etty P. Cortes
  • Phyllis L. Faust
  • Jean Paul G. Vonsattel
  • Elan D. Louis
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Abstract

A review of the brain banking literature reveals a primary focus either on the factors that influence the decision to become a future donor or on the brain tissue processing that takes place after the individual has died (i.e., the front-end or back-end processes). What has not been sufficiently detailed, however, is the complex and involved process that takes place after this decision to become a future donor is made yet before post-mortem processing occurs (i.e., the large middle-ground). This generally represents a period of many years during which the brain bank is actively engaged with donors to ensure that valuable clinical information is prospectively collected and that their donation is eventually completed. For the past 15 years, the Essential Tremor Centralized Brain Repository has been actively involved in brain banking, and our experience has provided us valuable insights that may be useful for researchers interested in establishing their own brain banking efforts. In this piece, we fill a gap in the literature by detailing the processes of enrolling participants, creating individualized brain donation plans, collecting clinical information and regularly following-up with donors to update that information, and efficiently coordinating the brain harvest when death finally arrives.

Keywords

Brain banking Brain donation Pre-mortem Enrollment Follow-up Autopsy Essential tremor 

Notes

Funding

This study was supported by the National Institutes of Health, R01 NS086736, and R01 NS088257.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflicts of interest.

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Copyright information

© Springer Nature B.V. 2018

Authors and Affiliations

  • Daniel Trujillo Diaz
    • 1
  • Nora C. Hernandez
    • 1
  • Etty P. Cortes
    • 2
    • 3
  • Phyllis L. Faust
    • 2
  • Jean Paul G. Vonsattel
    • 2
    • 3
  • Elan D. Louis
    • 1
    • 4
    • 5
  1. 1.Division of Movement Disorders, Department of Neurology, Yale School of MedicineYale UniversityNew HavenUSA
  2. 2.Department of Pathology and Cell BiologyColumbia University Medical Center and the New York Presbyterian HospitalNew YorkUSA
  3. 3.Taub Institute for Research on Alzheimer’s Disease and the Aging BrainColumbia UniversityNew YorkUSA
  4. 4.Center for Neuroepidemiology and Clinical Neurological Research, Yale School of MedicineYale UniversityNew HavenUSA
  5. 5.Department of Chronic Disease Epidemiology, Yale School of Public HealthYale UniversityNew HavenUSA

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