INSTRUCTIONS FOR PATIENTS AND FAMILY MEMBERS

The Cystic Fibrosis (CF) Foundation is conducting a survey of people with cystic fibrosis to better understand their health-related needs and quality of life. The CF Foundation is performing this study to better understand changes that people with CF have experienced in recent years, not only in their physical care and symptoms, but also in their personal life including emotional, social, and financial well-being. This survey will be used to characterize the needs of the community, including both people taking and not taking modulator therapies. Survey results will help inform future CF care and research.

This survey should be completed by adults with CF (age 18 years or older) and parents or caregivers on behalf of children with CF (age 17 or younger). The survey will take about 10 to 15 minutes to complete. Your participation is voluntary. You may choose to not answer any or all questions. There will be no negative consequences and no loss of benefits if you decide not to take part or to stop prior to completing the survey.

There are no physical risks to you by participating in this research survey.  There may be a risk of loss of confidentiality of your information, however there are measures in place to protect this information.

The information you provide will not be shared with anyone outside of the project except as disclosure is required by law. Only staff from the CF Foundation and researchers working in partnership with the CF Foundation, certain regulatory bodies and the Advarra IRB will have access to survey results. No identifying information will be requested in the survey or used in any presentation or publications about this project.

An institutional review board (IRB) is an independent committee established to help protect the rights of research subjects. If you have any questions about your rights as a research subject, contact:

  • By mail:
    • Study Subject Adviser
    • Advarra IRB
    • 6100 Merriweather Dr., Suite 600
    • Columbia, MD 21044
  • or call toll free:    877-992-4724
  • or by email:          adviser@advarra.com

Please reference the following number when contacting the Study Subject Adviser: Pro00063901.

Upon completion of the survey, you will have the option to submit your e-mail address to be entered in a random drawing for a $25 Amazon gift card. Please note, your email address will only be used for entry into the raffle for a gift certificate, and to notify you if you are an award recipient. Your email address will never be sold, shared, or attached to your survey responses. Your information and opinions will remain confidential.

If you have questions, concerns or complaints about the study or survey, please contact the Investigator, Elizabeth Yu, at eyu@cff.org. Thank you for your help.
 
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