ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
The ALLFTD study is a comprehensive frontotemporal Lobar Degeneration (FTLD) research initiative involving over 2,000 participants from North America, specifically the United States of America and Canada. Participants have been recruited since 2020 through families with known mutations linked to FTLD and clinical referrals from various sites across North America. Participants include adults diagnosed with FTLD spectrum disorders or carrying familial FTLD mutations. This initiative merges previous research efforts from the Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) studies and continues to enrol participants. Follow-up assessments are conducted annually, with the study planning to follow participants for up to 5 years.
Study design
Cohort, Cohort - clinical
Number of participants at first data collection
2,343 (participants as of December 2023)
Recruitment is ongoing
Age at first data collection
≥ 18 years (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
No
Sample features
Countries
Year of first data collection
2020
Primary Institutions
Mayo Clinic
University of California, San Francisco (UCSF)
Links
Profile paper DOI
Funders
National Institute of Neurological Disorders and Stroke (NINDS)
National Institute on Aging (NIA)
National Institutes of Health (NIH)
Ongoing?
Yes
Data types collected
- Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
- Interview – face-to-face
- Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
- Self-report questionnaire – paper or computer assisted
- None
- Magnetic Resonance Imaging (MRI)
- None
Engagement
Keywords
Consortia and dataset groups
