Long-term study of frontotemporal brain disease in families and individuals

Plain-English translation of NCT04363684 on ClinicalTrials.gov ↗ · Source last updated July 2025 · Translation generated June 2026 · How we translate trials

What is this trial?

The ALLFTD study is a long-term research program that follows people diagnosed with frontotemporal lobar degeneration (a progressive brain disease affecting memory, behavior, and language) as well as family members who carry genetic mutations linked to the disease but may not yet show symptoms. Researchers collect detailed information about how the disease progresses over time, including clinical assessments, brain imaging, and blood samples, to better understand the condition and design better clinical trials in the future.

Frontotemporal lobar degeneration is a rare but serious brain disease that currently has limited treatment options. By tracking patients and at-risk family members over many years, researchers hope to identify early warning signs, understand how the disease progresses differently in different people, and gather the information needed to test new treatments.

Do you qualify?

You likely qualify if…

you have been diagnosed with frontotemporal lobar degeneration or a related condition such as progressive supranuclear palsy, corticobasal degeneration, or primary progressive aphasia
you are a family member of someone with frontotemporal lobar degeneration and carry a known genetic mutation (in MAPT, GRN, C9orf72, or other genes) or have a family history of the disease
you are an asymptomatic family member (showing no symptoms yet) but have a known genetic mutation or strong family history of frontotemporal lobar degeneration
you are willing to participate in either annual clinic visits or a single clinic visit with blood sample collection

You likely don't qualify if…

you have a known Alzheimer's disease genetic mutation or biomarker evidence of Alzheimer's disease
you have a brain tumor or stroke that could explain your symptoms
you have a history of severe alcohol dependence, untreated vitamin B12 deficiency, uncontrolled thyroid disease, HIV infection, or severe organ failure
you are currently taking medications that significantly affect brain function in ways that could interfere with the study

What participation looks like

Participants can choose between two study arms. The main arm involves annual clinic visits where you'll complete memory and thinking tests, have brain imaging scans, answer questions about your health and family history, and provide blood samples—this continues for the length of the study. The second arm is simpler: a single clinic visit focused mainly on providing blood and other biosamples with limited clinical testing. The study aims to enroll about 2,100 participants over time.

AI-generated summary from trial data · Jun 1, 2026 · Not medical advice

Trial locations(27 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