TY - JOUR
T1 - Brain Donation Decisions as Disease Specific Behaviors
T2 - An Elucidation of the Donation Process in the Context of Essential Tremor
AU - Iglesias-Hernandez, Daniella
AU - Berry, Diane
AU - Hernandez, Nora
AU - Louis, Elan D.
N1 - Publisher Copyright:
© 2022 The Author(s).
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
KW - Brain donation
KW - brain banks
KW - brain repository
KW - essential tremor
KW - neurodegeneration
UR - http://www.scopus.com/inward/record.url?scp=85136257183&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85136257183&partnerID=8YFLogxK
U2 - 10.5334/tohm.704
DO - 10.5334/tohm.704
M3 - Article
C2 - 36072893
AN - SCOPUS:85136257183
SN - 2160-8288
VL - 12
JO - Tremor and Other Hyperkinetic Movements
JF - Tremor and Other Hyperkinetic Movements
IS - 1
M1 - 25
ER -