PCers Needed to Answer 4 Questions

2023 Voice of the Patient Update
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2023 Voice of the Patient Update

The EL-PFDD meeting with FDA in 2018 was a success and has been very critical in PC drug development. Because it has been five years, we plan to send an update to FDA officials to let them know we still need treatments for PC. Some of these questions may look familiar but it is important for you to complete them again for this update to the official Voice of the Patient Report.

Do not include your experience with recent clinical trials treatments in your answers.
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What is your age or the age of the person you care for?
In which PC gene is your specific mutation found?
1. Overall, how would you characterize your PC disease severity or the severity of the person you care for compared to someone without PC?
2. Which PC conditions have impacted your life? Check all that apply.
3. How satisfied are you with the treatments available today for your PC?
4. Have you ever utilized a mobility assistance device (e.g., wheelchair, cane, scooter, walker) or employed an alternative form of mobility (e.g. such as bikes, strollers, crawling, holding onto walls or rails, piggy-backing, holding onto another person, etc.) because of your PC?
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