Understanding how frontotemporal dementia progresses over time

Plain-English translation of NCT04363684 on ClinicalTrials.gov ↗ · Source last updated October 2026 · Translation generated August 2026 · How we translate trials

What is this trial?

The ALLFTD study is a long-term research program that tracks people living with frontotemporal dementia—a rare brain disease affecting thinking, behavior, and language—as well as family members who may be at genetic risk. Researchers collect medical information, brain imaging, and blood samples annually to better understand how the disease progresses and to help design future clinical trials.

Frontotemporal dementia is still poorly understood, and doctors need detailed information about how symptoms develop over time—especially in families with known genetic mutations. This study aims to create a comprehensive picture of the disease to help develop better treatments and identify people who might benefit from new therapies early on.

Do you qualify?

You likely qualify if…

you have been diagnosed with frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, or primary progressive aphasia
you are an asymptomatic family member of someone with familial frontotemporal dementia or carry a known disease-causing genetic mutation (MAPT, GRN, or C9orf72)
you have a clear family history of frontotemporal dementia without a known genetic mutation
you are able to attend annual clinic visits (for the main study arm) or at least one visit (for the biofluid-focused arm)

You likely don't qualify if…

you have a brain tumor or stroke that could explain your symptoms
you carry a genetic mutation for Alzheimer's disease or have biomarker evidence of Alzheimer's
you have severe untreated vitamin B12 deficiency, untreated thyroid disease, or are HIV positive
you have serious liver or kidney problems, or respiratory failure requiring supplemental oxygen
you have a recent history of severe alcohol or substance abuse

What participation looks like

If you join the main study arm, you will visit a clinic once per year for comprehensive evaluations that include clinical assessments, brain imaging, and blood draws to collect biomarkers. If you join the biofluid-focused arm, you will have a single clinic visit focused on collecting blood samples and basic information. The study is designed to follow participants over multiple years to track how the disease or genetic risk changes over time.

AI-generated summary from trial data · Aug 10, 2026 · Not medical advice

Trial locations(26 sites)

United States

University of Alabama Birmingham, Birmingham, Alabama

University of California, Los Angeles, Los Angeles, California

University of California, San Diego, San Diego, California

University of California San Francisco, San Francisco, California

University of Colorado Denver, Denver, Colorado