New Report Will Help the FDA to Evaluate Future Treatments for Frontotemporal Degeneration

Landmark AFTD Publication Brings Federal Attention to FTD, the Most Common Dementia under 60
Published: Oct. 27, 2021 at 11:23 AM CDT

KING OF PRUSSIA, Pa., Oct. 27, 2021 /PRNewswire/ -- Today, The Association for Frontotemporal Degeneration (AFTD) released Frontotemporal Degeneration (FTD): A Voice of the Patient Report. This report will provide the FDA with data and insights to evaluate future studies and treatments for FTD, the most common form of dementia under 60. As one family member describes it, FTD is the "cruelest, most unrelenting disease… We need relief, and it cannot come soon enough." Today, there is no cure, and there are no FDA-approved symptomatic or disease-modifying treatments.

AFTD logo. (PRNewsFoto/Association for Frontotemporal Degeneration)
AFTD logo. (PRNewsFoto/Association for Frontotemporal Degeneration)

The report summarizes and analyzes data and perspectives from more than 1,750 people living with FTD, care partners, caregivers, and family members. Participants shared vital insight through 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 develop disease-modifying treatments.

Among our findings:

  • More than 50% of respondents saw at least three doctors before receiving a correct diagnosis, and 44% were originally misdiagnosed with another condition.
  • 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).
  • 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.
  • 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 – they also show 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.

AFTD's Voice of the Patient report will be a resource to FDA regulators as they evaluate future FTD therapies. "Our community has given the FDA a resource to understand the perspectives, needs, and priorities of people and families with first-hand experience with FTD. It's an invaluable tool to regulators as they make key decisions on the benefits and risks of any potential therapy," said Penny Dacks, PhD, AFTD Senior Director of Scientific Initiatives.

About FTD: While FTD is the most common young-onset dementia, too few medical professionals are aware of it. On average, it takes nearly four years to get a correct diagnosis. Unlike Alzheimer's, which is characterized by a decline in memory, FTD causes irreversible changes in personality, behavior, language, and/or movement, while leaving memory relatively preserved.

About AFTD: Online at, AFTD is the largest national nonprofit devoted to providing resources to help families affected by FTD today, and advancing research to foster accurate diagnosis, treatments, and a cure. Our volunteer-founded organization – driven by thousands of volunteers and donors – reflects a community's profound determination to #endFTD.

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SOURCE Association for Frontotemporal Degeneration

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