FTD Insights Survey Data Presented at Latinos & Alzheimer’s Symposium



FTD data focused on the perspectives of Latino Americans living with and impacted by FTD was presented at the third Latinos & Alzheimer’s Symposium.

FTD Disorders Registry Director Dianna Wheaton, MS, PhD, CHES, virtually presented a poster titled “Perceptions of Frontotemporal Degeneration Among Latino Americans: A Sub-Cohort Assessment of the FTD Insights Survey” at the Symposium, held April 25-26.

The poster included a subset of data from the FTD Insights Survey, conducted by AFTD and the Registry.  The survey was completed by nearly 1,800 people from October 2020 through March 2021 in preparation for the AFTD-hosted Externally Led Patient-Focused Drug Development meeting, held in March 2021. Input shared at the meeting and data from the Insights Survey were included in the Voice of the Patient report, which summarizes and analyzes the perspectives of people living with FTD, care partners/caregivers, and other family members.

While the Latino perspectives reported in the survey represented a small sample size, the data suggests that Latino respondents had greater difficulty receiving an accurate FTD diagnosis, compared with all other respondents. More than half (53 percent) of Latino respondents said they or a loved one were incorrectly diagnosed with a different disease or condition before getting their FTD diagnosis, compared with 43 percent of non-Latino survey participants.

“Many questions remain regarding the lived experience of FTD in Latino populations,” the poster concludes. “Addressing these issues is a key step to improve diagnosis, care, and access to research opportunities.”

Authors of the poster included FTD Registry Manager Lakecia Vincent, MPH, MCHES; AFTD’s Director of Research Engagement Shana Dodge, PhD; and AFTD’s Senior Director of Scientific Initiatives and FTD Registry President Penny Dacks, PhD.

Read the FTD Disorders Registry press release here. View the “Perceptions of Frontotemporal Degeneration Among Latino Americans” poster here.

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