Frontotemporal dementia patient registry and clinical tracking
Clinical Core
Collects medical information, brain scans, and blood/CSF samples from people with frontotemporal lobar degeneration and their family members to follow the disease over time and support future 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-11198454 on NIH RePORTER |
What this research studies
You would join a multi-center network that enrolls people with sporadic or familial frontotemporal lobar degeneration (FTLD) and follows them over months and years. Participants receive regular clinical and neuropsychological testing, MRI brain scans, and collection of DNA, blood cells, plasma, and optional cerebrospinal fluid, with some use of digital health tools for remote monitoring. Clinical data are uploaded to national databases and imaging and biospecimens are processed at central repositories to support wide research use. The program also seeks advance directives for brain donation to link clinical course with tissue findings.
Who could benefit from this research
Good fit: Ideal candidates are people diagnosed with frontotemporal dementia/FTLD or family members at risk who can attend visits at participating centers and agree to imaging, sample collection, and follow-up visits.
Not a fit: People without FTLD or those unwilling to undergo MRI, provide biological samples, or participate in long-term follow-up or autopsy consent are unlikely to gain direct benefit from joining.
Why it matters
Potential benefit: If successful, this work could speed discovery of better tests and treatments by providing shared clinical data, images, and biological samples that researchers can use to understand and target FTLD.
How similar studies have performed: Previous ARTFL/LEFFTDS and ALLFTD consortium efforts have successfully collected similar data and advanced understanding of FTLD, though no approved disease-modifying treatments exist yet.
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.