Voices Of Individuals: Challenges and Experiences Of bvFTD
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ClinicalTrials.gov Identifier: NCT04060082 |
Recruitment Status :
Enrolling by invitation
First Posted : August 16, 2019
Last Update Posted : January 12, 2023
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Condition or disease | Intervention/treatment |
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Frontotemporal Dementia Frontotemporal Degeneration Frontotemporal Dementia, Behavioral Variant FTD | Other: Telephone Interview |
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 and the National Human Genome Research Institute. The goal of this study is to learn more about what it is like to live with or at high risk of developing behavioral variant frontotemporal dementia (bvFTD). The study will involve telephone interviews to help learn as much as possible about living with bvFTD. The hope is that this will guide future research, resource development, and clinical practice.
Participants will have at least two phone calls from the study team. During the initial phone call, which will take about 15 to 20 minutes, the participant will be asked some basic questions about demographics and the study details will be reviewed as part of the consent process. During another call the participant will be asked some questions to assess his or her thinking, and will complete the interview which will last about 30 to 60 minutes. There are no physical or medical procedures included in this study. The consent process, screening, interview scheduling, and the interview itself will take place over two or three phone calls, which may occur over several weeks.
A person may be able to take part in this study if they are a person with bvFTD, or if they have been found to have a genetic change that causes bvFTD.
Study Type : | Observational |
Estimated Enrollment : | 30 participants |
Observational Model: | Cohort |
Time Perspective: | Cross-Sectional |
Official Title: | VOICE Of bvFTD [Voices Of Individuals: Challenges and Experiences Of bvFTD] |
Actual Study Start Date : | June 26, 2019 |
Estimated Primary Completion Date : | December 2024 |
Estimated Study Completion Date : | December 2024 |

Group/Cohort | Intervention/treatment |
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Persons Diagnosed
Individuals with a diagnosis of bvFTD.
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Other: Telephone Interview
Participants will be asked to answer questions about their experiences with FTD. |
Persons At Risk
Individuals with a known genetic risk factor for bvFTD: people with genetic testing that identified a 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
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Other: Telephone Interview
Participants will be asked to answer questions about their experiences with FTD. |
- Affective and Behavioral Responses [ Time Frame: Through study completion: about 1.5-2 hours total over several weeks ]How participants describe and categorize their emotional reactions to receiving a diagnosis of bvFTD or positive genetic testing result, and their experiences living with that knowledge. It will also explore how patients describe their behavior in response to the testing or diagnosis, such as use of coping strategies, challenges faced, and decisions to disclose their status to family and friends.

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | 18 Years and older (Adult, Older Adult) |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
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

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT04060082
United States, Maryland | |
Johns Hopkins Medical Institution | |
Baltimore, Maryland, United States, 21287 | |
National Institutes of Health (NIH) | |
Bethesda, Maryland, United States, 20892 | |
United States, Pennsylvania | |
University of Pennsylvania (Penn Frontotemporal Degeneration Center) | |
Philadelphia, Pennsylvania, United States, 19104 |
Principal Investigator: | Jill Owczarzak, PhD | Johns Hopkins Bloomberg School of Public Health | |
Principal Investigator: | Murray Grossman, MDCM, EdD | University of Pennsylvania | |
Principal Investigator: | Lori Erby, PhD, ScM | National Institutes of Health (NIH) |
Responsible Party: | University of Pennsylvania |
ClinicalTrials.gov Identifier: | NCT04060082 |
Other Study ID Numbers: |
833507 |
First Posted: | August 16, 2019 Key Record Dates |
Last Update Posted: | January 12, 2023 |
Last Verified: | January 2023 |
Individual Participant Data (IPD) Sharing Statement: | |
Plan to Share IPD: | No |
Studies a U.S. FDA-regulated Drug Product: | No |
Studies a U.S. FDA-regulated Device Product: | No |
FTD Interview Genetics Persons diagnosed Frontotemporal degeneration bvFTD |
Chromosome 9 open reading frame 72 (C9ORF72) Microtubule-associated protein tau (MAPT) Progranulin (GRN) TAR DNA-binding protein (TARDBP) Valosin-Containing Protein (VCP) Charged multivesicular body protein 2B (CHMP2B) |
Dementia Frontotemporal Dementia Aphasia, Primary Progressive Pick Disease of the Brain Brain Diseases Central Nervous System Diseases Nervous System Diseases Neurocognitive Disorders Mental Disorders Neurodegenerative Diseases |
Frontotemporal Lobar Degeneration TDP-43 Proteinopathies Proteostasis Deficiencies Metabolic Diseases Aphasia Speech Disorders Language Disorders Communication Disorders Neurobehavioral Manifestations Neurologic Manifestations |