Status:
ACTIVE_NOT_RECRUITING
Voices Of Individuals: Challenges and Experiences Of bvFTD
Lead Sponsor:
University of Pennsylvania
Conditions:
Frontotemporal Dementia
Frontotemporal Degeneration
Eligibility:
All Genders
18+ years
Brief Summary
The VOICE Of bvFTD study is a telephone interview research study about life with or at risk for behavioral variant frontotemporal dementia (bvFTD). The study aims to understand how bvFTD impacts indiv...
Detailed Description
The VOICE Of bvFTD study is a study being conducted at the University of Pennsylvania. The study was developed and initiated in collaboration with the Johns Hopkins Bloomberg School of Public Health a...
Eligibility Criteria
Inclusion
- 18 years of age or older
- Speak fluent English
- People with bvFTD must have been diagnosed with behavioral variant frontotemporal degeneration (bvFTD)
- People with a known genetic risk factor for bvFTD must have an identified disease-causing change in a gene that is known to cause bvFTD, such as in C9ORF72, MAPT, GRN, VCP, TARDBP, CHMP2B, or another gene that has been identified as causing FTD in the family
- The diagnosis or genetic testing results must have been disclosed to the participant at least two months prior to study enrollment
Exclusion
- Inability to complete the informed consent comprehension process
- Under 18 years of age
- Does not speak English
- Received diagnosis or testing result less than two months prior to study enrollment
Key Trial Info
Start Date :
June 26 2019
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 1 2025
Estimated Enrollment :
30 Patients enrolled
Trial Details
Trial ID
NCT04060082
Start Date
June 26 2019
End Date
December 1 2025
Last Update
February 3 2025
Active Locations (3)
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1
Johns Hopkins Medical Institution
Baltimore, Maryland, United States, 21287
2
National Institutes of Health (NIH)
Bethesda, Maryland, United States, 20892
3
University of Pennsylvania (Penn Frontotemporal Degeneration Center)
Philadelphia, Pennsylvania, United States, 19104