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ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration

ARTFL (The Advancing Research and Treatment for Frontotemporal Lobar Degeneration) consortium, includes academic medical centers partnered with patient support organizations dedicated to conducting clinical research in sporadic and familial frontotemporal lobar degeneration (FLTD) syndromes.

LEFFTDS (Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects) is a longitudinal, multicenter study enrolling participants from families with known mutations in one of the three genes most commonly associated with FTLD: MAPT, GRN, and C9ORF72. This study is aimed at understanding familial frontotemporal lobar degeneration (FTLD).

The goal of both projects is to discover new biomarkers for disease activity, standardize diagnostic criteria, and identify a large group of potential participants for clinical trials of new therapeutic agents.

Study Participants

ARTFL: Approximately 1,560 patients and family members participate in clinical evaluations including history and examination, cognitive testing, questionnaires and surveys, and collection of blood. Patients include those with FTLD syndromes such as Corticobasal Degeneration Syndrome (CBD or CBS), primary progressive aphasias (PPA) including semantic variant (svPPA) and non-fluent variant (nvPPA), behavioral variant Frontotemporal Dementia (bvFTD), Frontotemporal Dementia with Amyotrophic Lateral Sclerosis (FTD-ALS), and Progressive Supranuclear Palsy (PSP). Healthy family members of patients with genetic causes of FTLD are also enrolled.

LEFFTDS: Enrolling 300 participants from families with known mutations in microtubule associated protein tau (MAPT), GRN, and C9ORF72. Both symptomatic and asymptomatic family members are enrolled and biospecimens are collected at four annual study visits; all study visits involve clinical evaluations and cognitive testing.

Available Data

The comprehensive database for ARTFL and LEFFTDS includes item-level data from medical, functional, and neuropsychological evaluations, as well as diagnostic information. Datasets may be requested through ARTFL and LEFFTDS; use must conform to the LEFFTDS and ARTFL Data Access and Publication Policy. There is a subset of participants with structural MRI data, available for download through the Laboratory for NeuroImaging at USC. A fixed minimal dataset is available through the NCRAD catalog.

Available Biospecimens

Genomic DNA, RNA, Plasma, Serum, PBMCs, and CSF are available from both cohorts.

ARTFL has biospecimens from the baseline study visit and includes CSF from a subset of subjects.

LEFFTDS has longitudinal biospecimens from 4 study visits. All subjects are asked to provide CSF but it is not required.

All biospecimen requests undergo a formal review by the ARTFL/LEFFTDS Biospecimens and Genetics Committee. Reviews are scheduled every two months according to the following schedule:

Date of SubmissionDate Reviewed (latest)
January 1-February 28March 31
March 1-April 30May 31
May 1 – June 30July 31
July 1 – August 31September 30
September 1- October 31November 30
November 1 – December 31January 31