What's it like to live with bvFTD? researchers ask patients directly.
NCT ID NCT04060082
First seen Jan 12, 2026 · Last updated Jun 14, 2026 · Updated 28 times
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 treatments or medications were tested.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Locations
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Johns Hopkins Medical Institution
Baltimore, Maryland, 21287, United States
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National Institutes of Health (NIH)
Bethesda, Maryland, 20892, United States
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University of Pennsylvania (Penn Frontotemporal Degeneration Center)
Philadelphia, Pennsylvania, 19104, United States
Conditions
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