About the ACTe Now! Patient Survey

This survey is for Black and African Americans, 18 years and older, who reside in the U.S. If you are not eligible to take this survey, there are other ways you can engage. Visit the Take ACTion  – Get Involved tab to learn how.

The survey should take approximately 45 minutes to complete. Please plan to set aside dedicated time to focus on completing the survey. If you are interrupted or need to take a break, you can leave and return to the survey, as long as you utilize the same device.

Yes. You can close out of the survey and return at a later time. Once you are ready to finish, return to the same device you used to start the survey, click on the survey link, and resume. You will automatically be prompted to pick up where you left off. Please note, FSR does not require a log in or user identification to maintain anonymity, so you must utilize the same device for the secured system to recognize you and return to your previous draft. 

Yes. The survey is mobile friendly so you can complete the survey on your phone.

The survey is confidential and anonymous. All responses will be collected in Qualtrics, which will ensure the data is secure in accordance with HIPAA guidelines. Upon completion of the survey, you will have an opportunity to provide your email address. This information will be separated (de-identified) from the responses and used only for the purpose of the raffle and to further engage in future opportunities associated with the initiative if interested. You will not be required to enter personal information to complete the survey.

The data will be analyzed and presented to patients, clinicians, researchers, and other stakeholders during a Key Opinion Leadership Meeting and Congressional Briefing hosted by FSR in 2023.  During these meetings, participants will discuss key findings, strategies to increase representation and engagement in clinical trials and recommendations to improve care and treatment for Black Americans with sarcoidosis.  

Two raffle winners will be selected to win a 2022 iPad Air.  Once the survey closes November 30, 2022, two respondents will be selected at random from those who entered the raffle by submitting their email address at the end of the survey. The raffle winners will be notified via the email address submitted. FSR will then ship the iPad to the winner’s preferred destination. Please note, if you enter your email to enter the raffle, this information will be separated (de-identified) from the responses you enter in the survey. This personal information will only be used for the purpose of the raffle or to contact you if you indicate you’re interested in participating in a focus group.