ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) represents the formalized integration of ARTFL (U54 NS092089; funded through 2019) and LEFFTDS (U01 AG045390; funded through 2019) as a single North American research consortium to study FTLD for 2019 and beyond.
⁃ Familial FTLD (f-FTLD) participants (either is acceptable):
• members of families in whom at least one member has a known disease-associated mutation in one of the major genes that cause f-FTLD: MAPT, GRN, C9orf72 (or other rare genes)
• an autosomal dominant family history of a FTLD syndrome (without a known gene) verified by medical record review or well-documented family history including family members with a medical history consistent with FTLD or a related disorder.
⁃ Sporadic FTLD (s-FTLD) participants:
⁃ Sporadic participants should be symptomatic with no known family history nor a genetic mutation indicating f-FTLD. All sporadic participants must have an FTLD syndrome as a referring diagnosis; those determined by ALLFTD clinicians to have non-FTLD diagnoses will be excluded from longitudinal visits, but their baseline visit will be included in comparative datasets. For inclusion in the longitudinal follow-up, participants should meet research criteria for one of the following FTLD syndromes:
• Progressive Supranuclear Palsy (PSP)
• Semantic variant Primary Progressive Aphasia (svPPA)
• Nonfluent variant Primary Progressive Aphasia (nfvPPA)
• Corticobasal Degeneration (CBD)/Corticobasal Syndrome (CBS)
• Behavioral variant Frontotemporal dementia (bvFTD)
• Frontotemporal Dementia with Amyotrophic Lateral Sclerosis (FTD/ALS)