Long-term program on frontotemporal lobar degeneration and familial frontotemporal dementia
ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration, Cycle 2 (ALLFTD2)
Tracks people with frontotemporal lobar degeneration and their family members over time to find biological markers that can guide future, protein-targeted treatments.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Mayo Clinic Rochester NIH-funded |
| Lab location | 1 site (Rochester, United States) |
| Project ID | NIH-11398816 on NIH RePORTER |
What this research studies
You would join a multi-center program that follows people with FTLD syndromes and at-risk family members over many years. Clinic visits include detailed exams, brain imaging, genetic testing, and collection of blood, spinal fluid, and other biospecimens. Researchers compare people with known MAPT, GRN, or C9orf72 mutations and those with sporadic disease to find markers that point to the underlying protein causing the disease. The data are used to improve diagnosis, develop biomarkers for tau vs TDP pathology, and prepare participants for future clinical trials.
Who could benefit from this research
Good fit: People with clinical frontotemporal dementia syndromes, individuals with a family history or known MAPT/GRN/C9orf72 mutations, and those with early-onset behavioral or language changes are ideal candidates.
Not a fit: People whose cognitive problems are solely due to Alzheimer's disease or unrelated medical issues, and anyone expecting an immediate treatment benefit, are unlikely to benefit directly from participation.
Why it matters
Potential benefit: Could produce tests that identify the underlying proteinopathy and make patients eligible for targeted therapies or trials.
How similar studies have performed: Prior ARTFL/LEFFTDS efforts created the network and datasets that have improved diagnosis and trial readiness, though protein-specific treatments are not yet proven.
Where this research is happening
Rochester, United States
- Mayo Clinic Rochester — Rochester, United States (Active)
Researchers
- Principal investigator: Boeve, Bradley F — Mayo Clinic Rochester
- Study coordinator: Boeve, Bradley F
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.