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Externally Led Patient-Focused Drug Development Meeting

AFTD is proud to announce the release of Frontotemporal Degeneration: A Voice of the Patient Report. This landmark 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 our March 5, 2021 Externally Led Patient-Focused Drug Development Meeting, as well as an FTD Insights Survey conducted with the FTD Disorders Registry. Channeling the resolve of a community, we offer this report to provide the FDA with data and insights to evaluate future studies and treatments for FTD, including behavioral variant FTD, FTD-ALS, primary progressive aphasia, corticobasal syndrome or degeneration, and progressive supranuclear palsy.

 

Frontotemporal Degeneration: A Voice of the Patient Report

On October 27, 2021, reflecting input from more than 1,750 people, AFTD released our Voice of the Patient Report on FTD. We dedicate this report to all who have lost a loved one to FTD and to all who work to address this disease. We share your hope for a world with compassionate care, effective support, and a future free of FTD. Read a press release.

>> Read FTD: A Voice of the Patient Report

Watch the Meeting

 

EL-PFDD Meeting Agenda (Held on March 5th, 2021)

Video Timestamp Agenda
0:00:00 Opening Remarks
Susan L-J Dickinson, MSGC, CEO, The Association for Frontotemporal Degeneration (AFTD)
0:06:44 FDA Welcome Remarks
Michelle Campbell, PhD, Sr. Clinical Analyst for Stakeholder Engagement & Clinical Outcomes, Division of Neurology Products, FDA
0:11:14 Background on FTD
Brad Dickerson, MD, Director, Frontotemporal Disorders Unit, Massachusetts General Hospital, Professor of Neurology, Harvard Medical School
0:26:21 Introduction & Meeting Overview
James Valentine, JD, MHS, Meeting Moderator
0:33:41 Demographic Polling
0:51:05 Topic 1 Panel 1: Health Effects and Daily Impacts
1:18:38 Moderated audience discussion and polling
James Valentine, JD, MHS, Susan Dickinson, MSGC
2:34:45 Topic 2: Current & Future Approaches to Treatment
James Valentine, JD, MHS
2:36:15 Panel 2A: Perspectives on Sporadic FTD
3:06:26 Panel 2B: Perspectives on Genetic FTD
3:29:22 Moderated audience discussion and polling
James Valentine, JD, MHS, Susan L-J Dickinson, MSGC
4:51:30 Meeting Summary
Larry Bauer, RN, MA, Hyman, Phelps, & McNamara, P.C.
5:06:13 Next Steps & Closing Remarks
Susan L-J Dickinson, MSGC

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