Voices of Individuals: Challenges and Experiences of bvFTD

What Is This Study About?

This observational study is designed to learn more about what it is like to live with, or be at high risk of developing, behavioral variant frontotemporal dementia (bvFTD). The study will involve two to three telephone calls, the longest lasting 30 to 60 minutes, to help investigators learn as much as possible about living with bvFTD in order to guide future research, resource development, and clinical practice. During the telephone interviews, participants will be asked basic questions about themselves, as well as questions to assess thinking.

Do I Qualify To Participate in This Study?

Must have:

• Speak fluent English
• Diagnosed with bvFTD or have a known genetic risk factor for bvFTD (e.g., change in C9ORF72, MAPT, GRN, VCP, TARDBP, CHMP2B, or another gene that has been identified as causing FTD in the family)

Must NOT have:

• Received diagnosis or genetic testing results within two months prior to study enrollment

If I Qualify, Who Do I Contact?

Contact study personnel listed either under the general study contact or the location nearest you.

 

Where Is This Study Located?

Who Sponsors This Study?

Lead: Johns Hopkins Bloomberg School of Public Health

Collaborator Sponsor

• National Institutes of Health (NIH)

Source: ClinicalTrials.gov ID: NCT04060082