CompletedNot Applicable

Voices Of Individuals: Challenges and Experiences Of bvFTD

United States26 participantsStarted 2019-06-26

Plain-language 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 individuals' day to day lives, how people think about themselves, and what challenges they face.

Who can participate

Age range18 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * 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 Criteria: * 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

What they're measuring

Affective and Behavioral Responses

Timeframe: Through study completion: about 1.5-2 hours total over several weeks

Trial details

NCT IDNCT04060082

SponsorUniversity of Pennsylvania

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2025-12-31

View on ClinicalTrials.gov More Frontotemporal Dementia trials