Externally Led Patient-Focused Drug Development Meeting

Learn from the voices of individuals and families affected by FTD: On March 5, 2021, AFTD will host a virtual Externally Led Patient-Focused Drug Development (EL-PFDD) meeting with representatives of the U.S. Food and Drug Administration.

This meeting will showcase the perspectives of people living with an FTD diagnosis, families, care partners, and those at risk, who will share pre-recorded testimonials and participate via live polls, chat, and phone-in. Professionals working in research, healthcare, nonprofit and government settings are invited to listen in on this free, open meeting as silent participants, to hear directly from the community we all serve. Please let us know if you plan to join this meeting through the event’s RSVP form.

Following the meeting, the AFTD will publish a Voice of the Patient report to capture highlights and perspectives from the Externally Led PFDD meeting. The report will include an addendum with highlights from an FTD Insights Survey, launched in partnership with the FTD Disorders Registry and encompassing responses from more than 1200 care partners, people with FTD, and people at risk in the U.S., Canada, and the U.K.

Since 2013, the FDA has used Patient-Focused Drug Development meetings and corresponding Voice of the Patient Reports to gain systematic insights into clinical context and what matters to families affected. These meetings provide an opportunity to hear directly from families and from advocates about the symptoms that matter, the impact of these symptoms on daily life, and their experiences with available treatments.

For more information on EL-PFDD meetings such as this one by AFTD, visit the FDA’s website.

Researchers and healthcare professionals with questions about the AFTD EL-PFDD meeting and VoP report may contact Penny Dacks at [email protected].