ALLFTD and 4RTNI
Biospecimens from ALLFTD, its predecessor studies ARTFL and LEFFTDS, and 4RTNI-1 and -2 are available through NCRAD under a shared request process coordinated through ALLFTD. Together, these collections support research on disease progression, biomarker discovery, diagnosis, and therapeutic development across the FTLD spectrum.
ALLFTD (ARTFL–LEFFTDS Longitudinal Frontotemporal Lobar Degeneration) brings together the ARTFL and LEFFTDS studies to investigate sporadic and familial FTLD. ARTFL (Advancing Research and Treatment for Frontotemporal Lobar Degeneration) enrolled individuals with FTLD syndromes, at risk family members (due to either family history or known genetic variants), and healthy family members. LEFFTDS (Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects) focused on symptomatic and asymptomatic members of families with known mutations in MAPT, GRN, or C9ORF72.
4RTNI-1 and -2 (4 Repeat Tauopathy Neuroimaging Initiative – Cycles 1 and 2) focused on the primary tauopathies corticobasal degeneration (CBD), PSP, and suggestive of or variant PSP syndromes. These studies evaluated methods for tracking disease progression and the relative value of imaging and fluid biomarkers for diagnosis and longitudinal assessment. Enrollment in both studies is currently closed, but analyses continue.
Study Participants
The combined collection includes participants from the following studies:
- ALLFTD and its predecessor studies, ARTFL and LEFFTDS: Individuals with behavioral variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), frontotemporal dementia with amyotrophic lateral sclerosis (FTD-ALS), CBS, or PSP; symptomatic and asymptomatic members of families with known FTLD-associated mutations; and healthy family members serving as controls.
- 4RTNI-1 and -2: Individuals aged 40–80 years at enrollment with CBS or CBD, PSP, or suggestive of or variant PSP, and healthy controls without known neurological disease.
Across the studies, assessments include clinical and neurological examinations, cognitive and functional testing, behavioral questionnaires, family history, and biospecimen collection. Imaging and additional specialized assessments are available for subsets of participants.
Participants were followed longitudinally according to study-specific visit schedules. Repeat biospecimens and associated clinical data are available for subsets of participants; the number of visits, intervals between visits, and specimen types and availability vary by study and participant.
Available Data
Available data include demographic and diagnostic information and item-level data from medical, functional, and neuropsychological evaluations. Structural MRI and other imaging data are available for subsets of participants. Data availability varies by study, participant, and visit.
A fixed minimal dataset accompanying fulfilled biospecimen requests is provided upon unblinding. Additional clinical and imaging data may be requested through ALLFTD, subject to applicable access and publication policies.
Investigators may request biospecimens from ALLFTD, ARTFL, LEFFTDS, and 4RTNI-1 and -2 through the shared ALLFTD request process. Approved requests are fulfilled by NCRAD.
Available Biospecimens
Genomic DNA, Cell Line DNA, RNA, Plasma, Serum, PBMCs, CSF