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FTD Insights Survey

Frontotemporal degeneration (FTD) is a group of brain disorders with a range of symptoms affecting each person and family differently. This survey is gathering important information about the experiences, opinions, and preferences of patients, family members, and caregivers. The data collected is anonymous; your name will not be asked, and your responses cannot be linked to you.

Input provided in October 2020 is being used to set the agenda for the Patient-Focused Drug Development (PFDD) meeting with the FDA on March 5, 2021. The overall findings from survey responses submitted by March 31, 2021, will be summarized in the Voice of the Patient report, a resource the FDA will use when making decisions about new FTD treatments. The FTD Insights results will be published in a scientific journal.

Eligible survey participants are persons diagnosed with FTD, current or former caregivers, and those at-risk for FTD. An FTD-diagnosed person may be assisted by a helper to complete their survey.

The following diagnoses are included:
  • bvFTDbehavioral variant FTD, frontotemporal dementia, or FTD dementia
  • CBD or CBScorticobasal degeneration or corticobasal syndrome
  • FTD-ALSFTD with ALS (amyotrophic lateral sclerosis) or FTD with MND (motor neuron disease)
  • PPAprimary progressive aphasia
    • no subtype given
    • nonfluent agrammatic PPA (nfvPPA) or progressive nonfluent aphasia (PNFA)
    • semantic variant PPA (svPPA) or semantic dementia
    • logopenic variant PPA (lvPPA) or logopenia 
  • PSPprogressive supranuclear palsy or Richardson's syndrome 
  • Pick’s disease
Survey participants must be 18 years of age or older and a resident of the United States, Canada, or the United Kingdom (UK by invitation only). Participation is voluntary.

This survey is expected to take between 20 and 30 minutes. It must be completed in one session. You will not be able to return to the survey once you leave.

We want to include your voice! The deadline to complete the survey to tell your story is March 31, 2021.