AFTD’s 3/5 EL-PFDD Meeting: View and Comment
Watch the Meeting
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.
TOPIC 1: LIVING WITH FTD: SYMPTOMS AND DAILY IMPACT
- Of all the symptoms of FTD, which 1- 3 symptoms have the most significant impact on the person with FTD?
- How has FTD affected the person with FTD on their best and worst days? Describe the best days and the worst days.
- How have the individual’s symptoms changed over time? How has the ability to cope with these symptoms changed over time?
- Are there specific, personally meaningful activities that the individual with FTD cannot do at all, or not do as fully because of FTD?
- What worries you most about living with FTD?
TOPIC 2: PERSPECTIVES ON CURRENT AND FUTURE APPROACHES TO TREATMENT
- What are you currently (or recently) doing to manage FTD symptoms?
- What are the most significant downsides to these FTD treatments and how do they affect daily life?
- How well have these treatments controlled FTD overall?
- 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?
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
|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
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.