title: Limiting Factors of Brain Donation in Neurodegenerative Diseases: The Example of French Memory Clinics.
abstract: Postmortem neuropathological examination of the brain is essential in neurodegenerative diseases, to ensure accurate diagnosis, to obtain an a posteriori critical assessment of the adequacy of clinical care, and to validate new biomarkers, but is only rarely performed. The purpose of this study was to assess factors limiting brain donation, such as reluctance of physicians to seek donation consent, opposition from patients and families, and organizational constraints. We conducted a survey across French memory clinics and major neuropathological centers. Few postmortem examinations were performed annually, as less than one third of the centers had performed at least five autopsies, and 41% had performed none. The main limiting factor was the lack of donation requests made by physicians, as half of them never approach patients for brain donation. Reasons for not seeking donation consent often include discomfort broaching the subject and lack of awareness of the medical and scientific benefit of postmortems (77%), organizational constraints (61%), and overestimation of families' negative reaction (51%). Family refusals represented a second major obstacle, and were often caused by misconceptions. Identifying and addressing these biases early could help improve physicians' rate of making requests and the public's awareness about the importance of brain donation.
authors.affiliation: Memory Clinic, French National Reference Centre for Young Onset Alzheimer's disease, Lille University Hospital, INSERM U1171, LabEx DISTALZ, Lille, France.
authors.forename: Raphael
authors.initials: R
authors.lastname: Le Bouc
authors.affiliation: Department of Neurology, CHRU Gui de Chauliac, Montpellier, France.
authors.forename: Cecilia
authors.initials: C
authors.lastname: Marelli
authors.affiliation: Regional Memory Center, CHU Hôpital Bretonneau, Tours, France.
authors.forename: Emilie
authors.initials: E
authors.lastname: Beaufils
authors.affiliation: INSERM E361, Pathologies of the Nervous System, Clinical and Epidemiological Research, Hôpital La Colombiére, Montpellier, France.
authors.forename: Claudine
authors.initials: C
authors.lastname: Berr
authors.affiliation: Regional Memory Center, CHU Hôpital Bretonneau, Tours, France.
authors.forename: Caroline
authors.initials: C
authors.lastname: Hommet
authors.affiliation: Department of Neurology, CHRU Gui de Chauliac, Montpellier, France.
authors.forename: Jacques
authors.initials: J
authors.lastname: Touchon
authors.affiliation: Memory Clinic, French National Reference Centre for Young Onset Alzheimer's disease, Lille University Hospital, INSERM U1171, LabEx DISTALZ, Lille, France.
authors.forename: Florence
authors.initials: F
authors.lastname: Pasquier
authors.affiliation: Memory Clinic, French National Reference Centre for Young Onset Alzheimer's disease, Lille University Hospital, INSERM U1171, LabEx DISTALZ, Lille, France.
authors.forename: Vincent
authors.initials: V
authors.lastname: Deramecourt
mesh_terms: D001344:Autopsy; D001921:Brain / Q000473:pathology*; D005602:France; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D019636:Neurodegenerative Diseases / Q000473:pathology*; D010820:Physicians; D012189:Retrospective Studies
keywords: Alzheimer’s disease; brain bank; brain donation; neurodegenerative diseases; postmortem examination