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Voices of dementia: patients share their stories in groundbreaking phone study

NCT ID NCT04060082

Summary

This study aimed to understand what daily life is like for people living with or at genetic risk for a specific type of dementia called behavioral variant frontotemporal dementia (bvFTD). Researchers conducted phone interviews with 26 participants to learn about their challenges, emotional responses, and coping strategies. The goal was to use these personal stories to guide future research and improve support for patients and families.

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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

Conditions

Explore the condition pages connected to this study.