What's it like living with bvFTD? researchers ask patients directly
NCT ID NCT04060082
First seen Jan 12, 2026 · Last updated Apr 29, 2026 · Updated 17 times
Summary
This completed study from the University of Pennsylvania interviewed 26 adults—people diagnosed with behavioral variant frontotemporal dementia (bvFTD) and those with a genetic risk—to learn how the condition affects their daily lives, emotions, and coping strategies. Through telephone conversations, researchers aimed to capture the real-world challenges and personal experiences of living with or at risk for bvFTD. No treatment was tested; the goal was simply to gather insights to improve understanding and support.
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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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