There’s still time to have your voice heard by completing an online U.S. Food and Drug Administration (FDA) survey about life with Parkinson’s. Tomorrow, October 30, is the last day to take the survey.
Data collected from the survey will be shared anonymously with the FDA and will inform its summary report on Parkinson’s disease (PD) and its drug approval process.
Parkinson’s community member Gary Rafaloff sat on a panel at the complementary Patient-Focused Drug Development meeting at the FDA in Silver Spring, Maryland on September 22. He advocated for people with PD and contributed to the patient survey design.
Gary shared his experience in a blog post on PatientsLikeMe:
“During the meeting, it was difficult for me to tell how our presentations were going and whether they would have an impact on the FDA’s staff ... One small item that I noticed, which suggests that they were listing, involves a question on the Patient Questionnaire. At the meeting, we were asked to choose from a list of Parkinson’s symptoms the ones that were most impactful on our lives. In my presentation, along with several of the other panel members, we noted that they didn’t include pain or orthostatic hypotension, two very common symptoms, on their list. I did, however, see that on the new follow-up survey the FDA is conducting, they have added both symptoms to the bottom of the list. So, at a minimum, they were listening as we spoke about these debilitating symptoms.”
Take the survey and lend your voice to the FDA’s Parkinson’s drug approval strategy. Encourage others to do the same by sharing the link with your Parkinson’s community.