ARTFL LEFFTDS Study Tracking Frontotemporal Lobar Degeneration Patients and Families Over Time

What this Trial Is About

Researchers are studying Frontotemporal Lobar Degeneration FTLD, a group of brain disorders affecting behavior, language, and movement. This study focuses on both sporadic and familial cases, as well as asymptomatic family members, to better understand the disease and improve future clinical trials. It combines two previous research programs into a single effort across North America. Participants join one of two groups a longitudinal arm with yearly comprehensive assessments including clinical exams, functional evaluations, brain imaging, and biofluid collections or a biofluid-focused arm with a single visit for limited clinical data and biospecimen collection. The longitudinal arm follows participants annually, while the biofluid arm involves just one clinic visit. During the study, participants undergo a variety of tests including brain volume measurements, neuropsychological testing, and impairment rating scales at baseline and yearly intervals up to five years. Plasma neurofilament light chain levels are also analyzed. This observational study includes people aged 18 and older and allows healthy volunteers. Participation involves regular clinic visits and assessments to track disease progression and gather data for research.

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)