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Share Your FTD Experiences with the FDA Through FTD Insights Survey

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In March 2021, the Association for Frontotemporal Degeneration (AFTD) will host a Patient-Focused Drug Discovery (PFDD) meeting with representatives of the U.S. Food and Drug Administration (FDA). This meeting offers a chance to inform the federal agency that regulates every prescription drug that enters the market about living with frontotemporal degeneration (FTD). By completing the FTD…

In March 2021, the Association for Frontotemporal Degeneration (AFTD) will host a Patient-Focused Drug Discovery (PFDD) meeting with representatives of the U.S. Food and Drug Administration (FDA). This meeting offers a chance to inform the federal agency that regulates every prescription drug that enters the market about living with frontotemporal degeneration (FTD). By completing the FTD Insights Survey, you can help set the meeting’s agenda.

AFTD has partnered with the FTD Disorders Registry to develop the anonymous survey. It takes about 20 to 30 minutes and is done through a confidential, secure online platform.

Eligibility Requirements

We want your voice included. If you are a person diagnosed with FTD, are a current or former family caregiver, or are at-risk for FTD, please take part and share your experience. An FTD-diagnosed person may be assisted by a helper to complete their survey.

Please note that the following diagnoses are included:

  • bvFTD - behavioral variant FTD, frontotemporal dementia, or FTD dementia
  • PPA - primary progressive aphasia
  • no subtype given
  • nonfluent agrammatic aphasia or PNFA
  • semantic variant primary progressive aphasia or semantic dementia
  • logopenia or logopenic aphasia
  • PSP - progressive supranuclear palsy or Richardson's syndrome
  • CBD/CBS - corticobasal degeneration or syndrome
  • FTD-ALS - FTD with ALS (amyotrophic lateral sclerosis); FTD with MND (motor neuron disease)
  • Pick’s disease

Participants must be 18 years of age or older, and a resident of the United States or Canada.

Your involvement is essential, and we greatly value your time and input. Your participation will tell of the lived experience of FTD and may influence both clinical trial design and the approval process for new therapies. By taking the survey before October 30, 2020, you will help inform the program AFTD presents to the FDA on March 5, 2021.

Together, we can have a direct impact on the future course of treatments, helping to bring hope to individuals and families facing this devastating disease.

Together we can find a cure for ftd

The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.

Your privacy is important! We promise to protect it. We will not share your contact information.

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