AFTD Seeking Community Input Ahead of Patient-Focused Drug Development Meeting



On March 5, 2021, AFTD will host a Patient-Focused Drug Development meeting with representatives of the U.S. Food and Drug Administration. The meeting presents a unique chance to speak directly to the federal agency that regulates every prescription drug that enters the market.

To help shape the meeting’s agenda, AFTD has partnered with the FTD Disorders Registry to develop the FTD Insights Survey for you to share your experience. This will help us and regulators with the FDA better understand what is most important to you regarding potential treatments and participating in clinical trials.

Eligibility Requirements: We want your voice included. If you are a person living with an FTD diagnosis, are a current or former family caregiver, or are at risk for FTD, please take part and share your experience. An FTD-diagnosed person may be assisted by a helper to complete their survey. Please note that all FTD-related syndromes including the following diagnoses are included: PSP, CBS, FTD-ALS, PPA, and bvFTD.

Participants must be 18 years of age or older, and a resident of the United States or Canada.

A broad representation of the many lived experiences of FTD is vital to maximizing the impact of this all-important meeting. Your collective input will have a significant influence on both clinical trial design and the approval process for new therapies. The anonymous survey takes approximately 20-30 minutes and is conducted through a confidential, secure online platform. It will close at the end of the month — please consider participating today.

We hope you will choose to participate and ensure that your valuable input is included in this pivotal audience with the FDA. AFTD is working every day to build a future where FTD is comprehensively treated and with your help, we can have a direct impact on the future course of FTD therapeutic development.

Click here to take the FTD Insights Survey!