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Banking brains: a pre-mortem "how to" guide to successful donation
Daniel Trujillo Diaz1, Nora C Hernandez1, Etty P Cortes2,3
1Division of Movement Disorders, Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA.
Cell and Tissue Banking
|September 17, 2018
Summary
Brain banking efforts often overlook the crucial middle-ground processes. This study details participant enrollment, individualized donation plans, and clinical data collection for successful brain donation programs.
Area of Science:
- Neurology
- Neuroscience
- Biomedical Research
Background:
- Existing brain banking literature primarily focuses on donor decision-making (front-end) or post-mortem tissue processing (back-end).
- The critical "middle-ground" period, involving long-term donor engagement and prospective data collection, remains insufficiently detailed.
- This gap hinders the establishment and optimization of effective brain banking initiatives.
Purpose of the Study:
- To address the literature gap by detailing the comprehensive processes involved in the middle-ground of brain banking.
- To provide practical insights and a procedural framework for researchers establishing new brain banking efforts.
- To highlight the importance of sustained donor engagement for successful brain donation.
Main Methods:
- Review of 15 years of experience from the Essential Tremor Centralized Brain Repository.
- Detailed description of participant enrollment procedures.
- Explanation of individualized brain donation plan creation and implementation.
- Outline of prospective clinical information collection and regular donor follow-up protocols.
- Description of strategies for efficient brain harvest coordination.
Main Results:
- Successful implementation of a long-term brain banking program through sustained donor engagement.
- Establishment of a robust system for prospective clinical data collection and updates.
- Efficient coordination of brain harvests, ensuring the completion of donation commitments.
- Valuable insights gained from 15 years of operational experience.
Conclusions:
- The middle-ground processes of brain banking are crucial for ensuring the quality and utility of donated brain tissue.
- A structured approach to participant enrollment, individualized planning, and ongoing engagement is essential for successful brain donation.
- The described methodologies offer a replicable model for establishing and managing effective brain banking repositories.
- Continued focus on the entire donation lifecycle, from enrollment to harvest, maximizes research potential.