Banking brains: a pre-mortem “how to” guide to successful donation
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.
KeywordsBrain banking Brain donation Pre-mortem Enrollment Follow-up Autopsy Essential tremor
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.
- Adler CH, Hentz JG, Joyce JN, Beach T, Caviness JN (2002) Motor impairment in normal aging, clinically possible Parkinson’s disease, and clinically probable Parkinson’s disease: longitudinal evaluation of a cohort of prospective brain donors. Parkinsonism Relat Disord 9:103–110CrossRefGoogle Scholar
- Benes FM (2005) Ethical issues in brain banking. Curr Opin Psychiatry 18:277–283. https://doi.org/10.1097/01.yco.0000165598.83305.4a CrossRefPubMedGoogle Scholar
- Brueton V, Stenning SP, Stevenson F, Tierney J, Rait G (2017) Best practice guidance for the use of strategies to improve retention in randomized trials developed from two consensus workshops. J Clin Epidemiol 88:122–132. https://doi.org/10.1016/j.jclinepi.2017.05.010 CrossRefPubMedPubMedCentralGoogle Scholar
- Gillman A, Babij R, Lee M, Moskowitz C, Faust PL, Louis ED (2014) Reflections: neurology and the humanities. Odd harvest Neurol 82:184–186Google Scholar
- Gustavson K, von Soest T, Karevold E, Roysamb E (2012) Attrition and generalizability in longitudinal studies: findings from a 15-year population-based study and a Monte Carlo simulation study. BMC Public Health 12:918. https://doi.org/10.1186/1471-2458-12-918 CrossRefPubMedPubMedCentralGoogle Scholar
- Murphy DD, Ravina B (2003) Brain banking for neurodegenerative diseases. Curr Opin Neurol 16:459–463. https://doi.org/10.1097/01.wco.0000084222.82329.f2 CrossRefPubMedGoogle Scholar
- Ramirez EPC, Keller CE, Vonsattel JP (2018) The New York Brain Bank of Columbia University: practical highlights of 35 years of experience. Handb Clin Neurol 150:105–118. https://doi.org/10.1016/B978-0-444-63639-3.00008-6 CrossRefPubMedGoogle Scholar
- Vonsattel JP, Amaya Mdel P, Cortes EP, Mancevska K, Keller CE (2008a) Twenty-first century brain banking: practical prerequisites and lessons from the past: the experience of New York Brain Bank, Taub Institute, Columbia University. Cell Tissue Bank 9:247–258. https://doi.org/10.1007/s10561-008-9079-y CrossRefPubMedPubMedCentralGoogle Scholar