Long-term tracking of frontotemporal dementia (ALLFTD2)
ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration, Cycle 2 (ALLFTD2)
This project follows people with frontotemporal dementia and those at genetic risk to learn how the condition starts and changes over time.
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-11398813 on NIH RePORTER |
What this research studies
If you join, you'll have regular visits where clinicians check thinking, behavior, and daily function and record your medical history. They will collect brain scans, blood and sometimes spinal fluid, and perform genetic testing to look for markers tied to specific proteins like tau or TDP-43. The project follows both people with sporadic frontotemporal dementia and families who carry MAPT, GRN, or C9orf72 mutations so researchers can compare how the disease begins and progresses. The goal is to build a large long-term dataset to help match future treatments to the right patients.
Who could benefit from this research
Good fit: People diagnosed with frontotemporal dementia, individuals with early symptoms, and family members who carry MAPT, GRN, or C9orf72 mutations are ideal candidates.
Not a fit: People without frontotemporal dementia or its genetic risk, or those seeking immediate approved treatments, are unlikely to get direct medical benefit from joining.
Why it matters
Potential benefit: Could lead to tests that identify the underlying protein type and speed development of treatments targeted to people with frontotemporal dementia.
How similar studies have performed: Earlier ARTFL and LEFFTDS efforts successfully enrolled long-term cohorts and advanced biomarker research, although no disease‑slowing treatments have yet been 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.