The longitudinal evaluation of familial frontotemporal dementia subjects protocol: Framework and methodology.
C9orf72
Frontotemporal dementia
GRN
Genetics
MAPT
TDP-43
Tau
Journal
Alzheimer's & dementia : the journal of the Alzheimer's Association
ISSN: 1552-5279
Titre abrégé: Alzheimers Dement
Pays: United States
ID NLM: 101231978
Informations de publication
Date de publication:
01 2020
01 2020
Historique:
pubmed:
23
10
2019
medline:
31
10
2020
entrez:
23
10
2019
Statut:
ppublish
Résumé
It is important to establish the natural history of familial frontotemporal lobar degeneration (f-FTLD) and provide clinical and biomarker data for planning these studies, particularly in the asymptomatic phase. The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects protocol was designed to enroll and follow at least 300 subjects for more than at least three annual visits who are members of kindreds with a mutation in one of the three most common f-FTLD genes-microtubule-associated protein tau, progranulin, or chromosome 9 open reading frame 72. We present the theoretical considerations of f-FTLD and the aims/objectives of this protocol. We also describe the design and methodology for evaluating and rating subjects, in which detailed clinical and neuropsychological assessments are performed, biofluid samples are collected, and magnetic resonance imaging scans are performed using a standard protocol. These data and samples, which are available to interested investigators worldwide, will facilitate planning for upcoming disease-modifying therapeutic trials in f-FTLD.
Identifiants
pubmed: 31636026
pii: S1552-5260(19)35113-1
doi: 10.1016/j.jalz.2019.06.4947
pmc: PMC6949411
mid: NIHMS1536663
doi:
Substances chimiques
C9orf72 Protein
0
C9orf72 protein, human
0
MAPT protein, human
0
tau Proteins
0
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
22-36Subventions
Organisme : NIA NIH HHS
ID : P30 AG013854
Pays : United States
Organisme : NIA NIH HHS
ID : K24 AG045333
Pays : United States
Organisme : NIA NIH HHS
ID : U24 AG021886
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG062421
Pays : United States
Organisme : NIA NIH HHS
ID : P01 AG019724
Pays : United States
Organisme : NIA NIH HHS
ID : P01 AG066597
Pays : United States
Organisme : NIA NIH HHS
ID : U01 AG045390
Pays : United States
Organisme : NINDS NIH HHS
ID : U54 NS092089
Pays : United States
Organisme : NIA NIH HHS
ID : U19 AG063911
Pays : United States
Organisme : NIA NIH HHS
ID : U01 AG016976
Pays : United States
Informations de copyright
© 2019 The Authors. Alzheimer's & Dementia published by Wiley Periodicals, Inc. on behalf of Alzheimer's Association.
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