The Final 10%: Take The Survey From Emily's Entourage - Now Closed
The survey is now closed. Thank you to everyone who participated!
Emily’s Entourage is conducting a survey about the “final 10%” of the CF community that does not benefit from currently available CFTR modulators, which they will be presenting to the FDA in July (more on this below).
If you are part of the final 10% that does not benefit from existing modulators, we strongly encourage you to take the survey (also linked below). Your input is critical! This is a small (but mighty!) community and the more data we can gather, the stronger our voice and more compelling our case!
Am I eligible for this survey?
Any individual or parent, spouse, or other family member of an individual that does not benefit from currently available CFTR modulators can participate whether that is because of ineligible genetic mutations, side effects, lack of access, or more. The survey is open to individuals around the world.
To take the survey, please click on the link below. The survey will remain open until Thursday, June 24 at 10 pm ET, but we encourage you to take it as soon as possible to assist in the data collection efforts. Please note, the survey should take around 20 minutes.
About the survey
The survey is designed to collect information to better understand the current health status, impact of CF, and unmet needs of those in the final 10% that do not benefit from existing CFTR modulators, whether that is because of ineligible genetic mutations, side effects, lack of access, or more.
The results of this survey will be presented to the US Food and Drug Administration (FDA) in July 2021 and will be used for educational and informational purposes in the future. Responses are completely anonymous and individual personal information will not be sold or shared.
About Emily’s Entourage
Emily’s Entourage is a 501(c)3 that speeds research and drug development for those with nonsense mutations of Cystic Fibrosis (CF). Learn more at www.emilysentourage.org.
Finally, we’d sincerely appreciate your help spreading the word and getting the survey to as many members of the final 10% of the CF community as possible. Please feel free to share this with any individuals or groups that you think might be appropriate.
If you have any questions, please do not hesitate to reach out to email@example.com.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?