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Voices of Individuals: Challenges and Experiences of bvFTD


This observational study is designed to learn more about what it is like to live with or at high risk of developing behavioral variant frontotemporal dementia (bvFTD).

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years N/A All No
June 26, 2019
January 2021

  • 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)

  • Received diagnosis or genetic testing results within 2 months prior to study enrollment

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.

Name City State Zip Status Primary Contact
Johns Hopkins Medical Institution
Baltimore Maryland 21287 Completed

National Institutes of Health (NIH)
Bethesda Maryland 20892 Completed

University of Pennsylvania (Penn Frontotemporal Degeneration Center)
Philadelphia Pennsylvania 19104 Recruiting Laynie Dratch, BA

Johns Hopkins Bloomberg School of Public Health

  • National Institutes of Health (NIH)

Name Role Affiliation
Jill Owczarzak, PhD Principal Investigator Johns Hopkins Bloomberg School of Public Health
Murray Grossman, MDCM, EdD Principal Investigator University of Pennsylvania
Lori Erby, PhD, ScM Principal Investigator National Institutes of Health (NIH)

Name Phone Email
Laynie Dratch, BA 301-827-5029
Lori Erby, PhD, ScM


VOICE Of bvFTD [Voices Of Individuals: Challenges and Experiences Of bvFTD]