Brain Donation Decisions as Disease Specific Behaviors: An Elucidation of the Donation Process in the Context of Essential Tremor.
Brain Donation Decisions as Disease Specific Behaviors: An Elucidation of the Donation Process in the Context of Essential Tremor.
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DOI：
10.5334/tohm.704
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发表时间：
2022
影响因子：
2.2
通讯作者：
Louis, Elan D
中科院分区：
文献类型：
--
作者：
Iglesias-Hernandez, Daniella;Berry, Diane;Hernandez, Nora;Louis, Elan D
脑捐赠是一个具有挑战性的过程，包括四个连续的阶段：（1）脑捐赠决定，（2）死前安排和随访，（3）标本收集和（4）组织处理。重要的是要了解与每个阶段相关的因素。目前，关于涉及捐赠者个人和文化背景的因素以及这些因素如何影响这一过程的信息非常广泛。然而，人们对影响这一过程的疾病特异性因素知之甚少。特发性震颤中央脑库成立于2003年，经过近20年的收集特发性震颤（ET）脑组织，我们有能力从疾病特异性的角度讨论大脑捐赠过程。在目前的手稿中，我们讨论了影响大脑捐赠过程前两个阶段的ET疾病特异性因素。我们的讨论集中在三个方面：（1）影响患者决定捐赠的因素，（2）捐赠中近亲的参与，以及（3）前瞻性招募患者并在解剖捐赠发生之前对其进行纵向评估的基本原理。这一讨论分享了我们对知识库运作背景的理解，可能对研究类似神经退行性疾病的其他脑库有价值。
Brain donation is a challenging process, comprising four sequential stages: (1) the brain donation decision, (2) pre-mortem arrangements and follow up, (3) specimen collection and (4) tissue processing. It is important to understand the factors that are pertinent to each stage. Currently, there is extensive information on factors that involve donor’s personal and cultural backgrounds and how these could affect the process. However, little is known about disease-specific factors that influence the process. The Essential Tremor Centralized Brain Repository was established in 2003, and after nearly 20 years of collecting essential tremor (ET) brain tissue, we are well-positioned to discuss the brain donation process from a disease-specific standpoint. In the current manuscript, we discuss ET disease-specific factors that influence the first two stages of the brain donation process. We center our discussion around three points: (1) factors that influence the patient’s decision to donate, (2) the involvement of next of kin in the donation, and (3) the rationale for enrolling patients prospectively and evaluating them longitudinally before the anatomical gift takes place. This discussion shares our understanding of the background from which our repository operates and may be of value for other brain banks that study similar neurodegenerative diseases.
影响因子：
3.4
作者：
Cristal AD;Chen KP;Hernandez NC;Factor-Litvak P;Clark LN;Ottman R;Louis ED
通讯作者：
Louis ED