The longitudinal evaluation of familial frontotemporal dementia subjects protocol: Framework and methodology

• DOI: 10.1016/j.jalz.2019.06.4947
• Publication Date: 2019-10-18T09:34:48Z
• Authors: Bradley Boeve; Jessica Bove; Patrick Brannelly; Danielle Brushaber; Giovanni Coppola; Rielly Dever; Christina Dheel; Bradford Dickerson; Susan Dickinson; Kelley Faber; Julie Fields; Jamie Fong; Tatiana Foroud; Leah Forsberg; Ralitza Gavrilova; Debra Gearhart; Nupur Ghoshal; Jennifer Goldman; Jonathan Graff‐Ra...; Neill Graff‐Radford; Murray Grossman; Dana Haley; Hilary Heuer; Ging‐Yuek Robin H...; Edward Huey; David Irwin; David Jones; Lynne Jones; Kejal Kantarci; Anna Karydas; David Knopman; John Kornak; Ruth Kraft; Joel Kramer; Walter Kremers; Walter Kukull; Maria Lapid; Diane Lucente; Ian Mackenzie; Masood Manoochehri; Scott McGinnis; Bruce Miller; Rodney Pearlman; Len Petrucelli; Madeline Potter; Rosa Rademakers; Eliana Marisa Ramos; Kate Rankin; Katya Rascovsky; Pheth Sengdy; Les Shaw; Jeremy Syrjanen; Nadine Tatton; Joanne Taylor; Arthur Toga; John Trojanowski; Sandra Weintraub; Bonnie Wong; Zbigniew Wszolek; Adam Boxer; Howard Rosen
• Keywords: Frontotemporal lobar degeneration

Abstract Introduction It is important to establish the natural history of familial frontotemporal lobar degeneration (f‐FTLD) and provide clinical biomarker data for planning these studies, particularly in asymptomatic phase. Methods The Longitudinal Evaluation Familial Frontotemporal Dementia Subjects protocol was designed enroll follow at least 300 subjects more than three annual visits who are members kindreds with a mutation one most common f‐FTLD genes—microtubule‐associated protein tau, progranulin, or chromosome 9 open reading frame 72. Results We present theoretical considerations aims/objectives this protocol. also describe design methodology evaluating rating subjects, which detailed neuropsychological assessments performed, biofluid samples collected, magnetic resonance imaging scans performed using standard Discussion These samples, available interested investigators worldwide, will facilitate upcoming disease‐modifying therapeutic trials f‐FTLD.