Long-term tracking of frontotemporal lobar degeneration in patients and families
ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration, Cycle 2 (ALLFTD2)
Tracking people with frontotemporal lobar degeneration (and family members at risk) over time to find biological markers and measurements that could lead to better diagnosis and 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-11198452 on NIH RePORTER |
What this research studies
This project follows people who have FTLD and their relatives over many years, with regular clinic visits that include cognitive testing, brain imaging, blood and spinal fluid sampling, and genetic testing. The team looks for biomarkers that can tell whether the disease is driven by tau or TDP protein and for changes that appear before symptoms in at-risk family members. Collected data and samples are shared with researchers to speed up development of targeted therapies and to support future clinical trials. The effort builds on prior ARTFL/LEFFTDS work and is coordinated through centers such as Mayo Clinic to maintain long-term follow-up.
Who could benefit from this research
Good fit: People diagnosed with frontotemporal lobar degeneration or family members who carry or may carry MAPT, GRN, or C9orf72 gene variants, including presymptomatic relatives, are ideal candidates.
Not a fit: People with other types of dementia not related to FTLD or those unwilling to attend repeated clinic visits and testing may not directly benefit from this project.
Why it matters
Potential benefit: Could lead to earlier and more accurate diagnosis and help match patients to therapies that target the specific underlying protein or gene.
How similar studies have performed: Previous ARTFL/LEFFTDS cohorts have successfully collected clinical, imaging, and genetic data and helped identify potential biomarkers, although disease‑slowing treatments have not 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.