AFTD Documents the FTD Experience for the FDA in “Voice of the Patient” Report



AFTD has completed its Voice of the Patient report, summarizing and analyzing data and perspectives from more than 1,750 people living with FTD, care partners, caregivers, and family members.

Participants shared their vital insight through both a March 5, 2021 Externally Led Patient-Focused Drug Development (EL-PFDD) meeting hosted by AFTD, as well as an FTD Insights Survey conducted with the FTD Disorders Registry. Participants describe how FTD has impacted their lives, and express strong resolve to assist in the development of disease-modifying treatments by taking part in clinical trials and other research.

The comprehensive document was created to help the U.S. Food and Drug Administration (FDA) regulators understand the experiences and priorities of people living with FTD disorders and what they and their care partners/caregivers most want to see in treatment options.

Among its findings:

  • More than 50% of respondents saw at least three doctors before receiving a correct diagnosis, and 44% were originally misdiagnosed with another condition.
  • Persons diagnosed and care partners reported a wide range of symptoms experienced across FTD disorders, including changes in language, thinking, personality, mood, and motor functioning, with few individuals finding relief from any existing medical or non-medical interventions.
  • Among persons diagnosed, the symptom most frequently cited as the most distressing was difficulty with language (including an inability to find the right word, a decline in speaking ability, or a decline in writing ability).
  • 87% of persons diagnosed said they were either “willing” or “very willing” to participate in a clinical trial to develop an FTD treatment, while 77% percent of genetically at-risk relatives expressed a willingness to participate.

“The findings of this report demonstrate not only that FTD profoundly impacts families in countless ways – it also shows that this community is ready and willing to participate in clinical trials to hasten the development of urgently needed treatments,” said AFTD CEO Susan L-J Dickinson, MSGC.

Download the Voice of the Patient report here.

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