Trujillo Diaz Daniel, Hernandez Nora C, Cortes Etty P, Faust Phyllis L, Vonsattel Jean Paul G, Louis Elan D
Division of Movement Disorders, Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA.
Department of Pathology and Cell Biology, Columbia University Medical Center and the New York Presbyterian Hospital, New York, NY, USA.
Cell Tissue Bank. 2018 Dec;19(4):473-488. doi: 10.1007/s10561-018-9720-3. Epub 2018 Sep 15.
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.
对脑库文献的回顾表明,主要关注点要么是影响个人决定成为未来捐赠者的因素,要么是个体死亡后进行的脑组织处理过程(即前端或后端流程)。然而,尚未得到充分详细阐述的是,在做出成为未来捐赠者的决定后、尸检处理之前所发生的复杂且繁琐的过程(即漫长的中间阶段)。这通常涵盖许多年的时间,在此期间,脑库积极与捐赠者合作,以确保前瞻性地收集有价值的临床信息,并最终完成他们的捐赠。在过去15年里,特发性震颤集中脑库一直积极参与脑库工作,我们的经验为我们提供了宝贵的见解,可能对有兴趣开展自身脑库工作的研究人员有用。在本文中,我们通过详细介绍招募参与者的过程、制定个性化脑捐赠计划、收集临床信息并定期与捐赠者跟进以更新信息,以及在死亡最终来临时高效协调脑部采集工作,填补了文献中的空白。