NCT04060082Completed
Voices Of Individuals: Challenges and Experiences Of bvFTD
VOICE Of bvFTD [Voices Of Individuals: Challenges and Experiences Of bvFTD]
Source: ClinicalTrials.gov · Last updated 12 Jan 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 26 (actual)
- First submitted
- 14 Aug 2019
- Start date
- 26 Jun 2019
- Primary completion date
- 31 Dec 2025
- Lead sponsor
- University of Pennsylvania
- Diseases
- Frontotemporal dementia
- NCT number
- NCT04060082
What you commit to
- Study type: Observational
- Participants enrolled: 26
- From 26 Jun 2019 to the primary completion date, 31 Dec 2025
- 3 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Prior treatment
- Received diagnosis or testing result less than two months prior to study enrollment
Age
- Under 18 years of age
Other
- Inability to complete the informed consent comprehension process
- Does not speak English
Who the study is looking for
- 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
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (3)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Johns Hopkins Medical Institution Coordinator of this site? Confirm its status | Baltimore | United States | Unknown status |
| National Institutes of Health (NIH) Coordinator of this site? Confirm its status | Bethesda | United States | Unknown status |
| University of Pennsylvania (Penn Frontotemporal Degeneration Center) Coordinator of this site? Confirm its status | Philadelphia | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.