AFTD’s 3/5 EL-PFDD Meeting: View and Comment

Externally Led Patient-Focused Drug Development Meeting

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Post Meeting Comments

Below we list the questions that were shared during AFTD’s EL-PFDD meeting on 3/5/2021. People with FTD and family members who haven’t yet had a chance to answer them are encourage to share your responses to any or all of the following questions using the comment form below. The submission form will remain open until April 5th, 2021. We appreciate your participation in this vital effort.


  1. Of all the symptoms of FTD, which 1- 3 symptoms have the most significant impact on the person with FTD?
  2. How has FTD affected the person with FTD on their best and worst days? Describe the best days and the worst days.
  3. How have the individual’s symptoms changed over time? How has the ability to cope with these symptoms changed over time?
  4. Are there specific, personally meaningful activities that the individual with FTD cannot do at all, or not do as fully because of FTD?
  5. What worries you most about living with FTD?


  1. What are you currently (or recently) doing to manage FTD symptoms?
  2. What are the most significant downsides to these FTD treatments and how do they affect daily life?
  3. How well have these treatments controlled FTD overall?
  4. Along the pathway to a cure, what specific things would you look for in an ideal treatment for FTD? What factors do you consider when making decisions about selecting a drug for prevention or treatment?
PFDD: Post-Meeting Comment Form
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Please note: We will factor and include as many comments as possible in our meeting. Due to time restrictions, we may not be able to get to all comments on the air. Your input is appreciated!

Take the Survey

We hope you have had an opportunity to take the FTD Insights Survey developed by AFTD and the FTD Disorders Registry, as all responses received this month will be used to shape our Patient-Focused Drug Development meeting’s agenda. The survey is open to all who are living with an FTD diagnosis, to current family caregivers, former caregivers, and to people at risk of FTD, in the U.S. or Canada. Please note that all forms of FTD are included in our survey, including bvFTD, PPA, PSP, CBS, and FTD-ALS. If you have not had a chance, please take the survey.

EL-PFDD March 5th, 2021 Meeting Agenda

Time Agenda
10:00 AM Opening Remarks
Susan L-J Dickinson, MSGC, CEO, The Association for Frontotemporal Degeneration (AFTD)
10:10 AM FDA Welcome Remarks
Michelle Campbell, PhD, Sr. Clinical Analyst for Stakeholder Engagement & Clinical Outcomes, Division of Neurology Products, FDA
10:20 AM Background on FTD
Brad Dickerson, MD, Director, Frontotemporal Disorders Unit, Massachusetts General Hospital, Professor of Neurology, Harvard Medical School
10:35 AM Introduction & Meeting Overview
James Valentine, JD, MHS, Meeting Moderator
10:40 AM Demographic Polling
10:45 AM Topic 1 Panel 1: Health Effects and Daily Impacts
11:10 AM Moderated audience discussion and polling
James Valentine, JD, MHS, Susan Dickinson, MSGC
12:25 PM Lunch Break
12:55 PM Topic 2: Current & Future Approaches to Treatment
James Valentine, JD, MHS
1:00 PM Panel 2A: Perspectives on Sporadic FTD
1:25 PM Panel 2B: Perspectives on Genetic FTD
1:55 PM Moderated audience discussion and polling
James Valentine, JD, MHS, Susan L-J Dickinson, MSGC
3:15 PM Meeting Summary
Larry Bauer, RN, MA, Hyman, Phelps, & McNamara, P.C.
3:20 PM Next Steps & Closing Remarks
Susan L-J Dickinson, MSGC

If you joined us for EL-PFDD meeting on March 5th, 2021, you may have encountered some unfamiliar terms. This glossary of key terms may be helpful.

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Join the FTD Disorders Registry

You can play an ongoing role in advancing the science and moving us faster toward finding treatments and cures for FTD by participating in the FTD Disorders Registry. FTD-diagnosed persons, their caregivers, family members, and friends can join and share their story. To learn more, please visit FTD Disorders Registry website, or join the Registry below.



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