What’s it like to live with bvFTD? researchers ask patients directly
NCT ID NCT04060082
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study interviewed 26 adults who either have behavioral variant frontotemporal dementia (bvFTD) or carry a gene that puts them at risk. The goal was to learn how the condition affects daily life, emotions, and coping. No treatment or medication was tested—just listening and gathering insights.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for FRONTOTEMPORAL DEGENERATION are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
-
Johns Hopkins Medical Institution
Baltimore, Maryland, 21287, United States
-
National Institutes of Health (NIH)
Bethesda, Maryland, 20892, United States
-
University of Pennsylvania (Penn Frontotemporal Degeneration Center)
Philadelphia, Pennsylvania, 19104, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Can a nudge in your chart unlock Life-Saving genetic clues?
- Could a brain disease change behavior years before diagnosis?
- Smart bracelets could read the hidden signs of apathy in dementia
- Can a synthetic cannabinoid calm agitation in frontotemporal dementia?
- Can sound waves soothe Dementia's emotional turmoil?
- Brain scan tracer could reveal hidden signs of psychosis in Parkinson's