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.
Watch the Meeting
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 Frontotemporal Degeneration: A Voice of the Patient Report
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 |
Thank you to our sponsors
FTD Disorders Registry
For AFTD research and industry collaboration, please contact Shana Dodge, PhD at [email protected]. For collaboration with FTD Disorders Registry, contact Dianna Wheaton, PhD at [email protected]. For press inquiries, email Matt Ozga at [email protected]. To learn more about sponsorship opportunities, email Liz Graham at [email protected]