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The longitudinal evaluation of familial frontotemporal dementia subjects protocol: Framework and methodology
Author(s) -
Boeve Bradley,
Bove Jessica,
Brannelly Patrick,
Brushaber Danielle,
Coppola Giovanni,
Dever Rielly,
Dheel Christina,
Dickerson Bradford,
Dickinson Susan,
Faber Kelley,
Fields Julie,
Fong Jamie,
Foroud Tatiana,
Forsberg Leah,
Gavrilova Ralitza,
Gearhart Debra,
Ghoshal Nupur,
Goldman Jennifer,
GraffRadford Jonathan,
GraffRadford Neill,
Grossman Murray,
Haley Dana,
Heuer Hilary,
Hsiung GingYuek Robin,
Huey Edward,
Irwin David,
Jones David,
Jones Lynne,
Kantarci Kejal,
Karydas Anna,
Knopman David,
Kornak John,
Kraft Ruth,
Kramer Joel,
Kremers Walter,
Kukull Walter,
Lapid Maria,
Lucente Diane,
Mackenzie Ian,
Manoochehri Masood,
McGinnis Scott,
Miller Bruce,
Pearlman Rodney,
Petrucelli Len,
Potter Madeline,
Rademakers Rosa,
Ramos Eliana Marisa,
Rankin Kate,
Rascovsky Katya,
Sengdy Pheth,
Shaw Les,
Syrjanen Jeremy,
Tatton Nadine,
Taylor Joanne,
Toga Arthur,
Trojanowski John,
Weintraub Sandra,
Wong Bonnie,
Wszolek Zbigniew,
Boxer Adam,
Rosen Howard
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2019.06.4947
Subject(s) - frontotemporal lobar degeneration , frontotemporal dementia , dementia , neuropsychology , biomarker , protocol (science) , medicine , psychology , clinical trial , disease , psychiatry , pathology , cognition , genetics , biology , alternative medicine
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. Methods 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. Results 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. Discussion These data and samples, which are available to interested investigators worldwide, will facilitate planning for upcoming disease‐modifying therapeutic trials in f‐FTLD.