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What’s it like to live with bvFTD? researchers ask patients directly

NCT ID NCT04060082

Knowledge-focused Sponsor: University of Pennsylvania Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study interviewed 26 adults who either have behavioral variant frontotemporal dementia (bvFTD) or carry a gene that puts them at risk. The goal was to learn how the condition affects daily life, emotions, and coping. No treatment or medication was tested—just listening and gathering insights.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

26 people

The number who actually took part.

Started

Jun 2019

Finished

Dec 2025

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Participants for the study will be recruited through the University of Pennsylvania and ClinicalTrials.gov. Previously, participants were also recruited through Johns Hopkins University, through a dementia research study at the National Institutes of Health, through the Penn FTD Center Caregiver Conference, and through through a private Facebook group for individuals with C9orf72 mutations.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

behavioral variant of frontotemporal dementia frontotemporal dementia frontotemporal dementia with motor neuron disease inclusion body myopathy with Paget disease of bone and frontotemporal dementia type 1 Pick disease semantic dementia

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Frontotemporal degeneration Frontotemporal dementia Frontotemporal dementia, behavioral variant FTD

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

More trials for these conditions

Other studies related to the condition(s) this trial covers.