In America: What's That?
Last updated: April 2023
We know that cystic fibrosis (CF) is more than a lung disease. It affects the whole body - gastrointestinal system, sinuses, pancreas, liver, bones, and more. For many, CF is also so much more than physical. It influences our minds, work, hobbies, and relationships.
What is the survey about?
The survey covers “basics” like your diagnosis and treatment experiences, but also dives into the nuances of CF, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about CF, but also any other conditions you are living with and how each impacts your life.
Why should you take the survey?
Each person who takes the In America survey contributes to a better understanding of CF as well as other health conditions. With better knowledge, we can help others who are navigating health challenges feel less alone. We hope to capture a full picture of all aspects of your health experiences and bring greater awareness to conditions that may be misunderstood. Sharing your experiences through the survey can reveal how similar each person’s journey is, as well as the differences that make each journey unique.
What will the survey ask me?
The survey will ask about different moments of your journey with CF, including:
- Symptoms and symptom management
- Quality of life
- Treatment awareness and experience
- Other diagnosed conditions
We do not require your name, address, or other personal information for you to participate. You also do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return when you are able. You may continue where you left off.
How do we use the In America survey data?
Survey responses help us and our partners better understand the CF community. All survey responses remain confidential, reported only in total. This means your specific responses will not be reported individually. All information will become property of Health Union, LLC.
What happens after I take the survey?
After the survey closes each year, Cystic-Fibrosis.com will share the responses back to the community and highlight important findings from the survey. You can read the latest In America survey findings in "Hope for the Future, Honoring the Present".
But that is not all. Throughout the year, we publish articles and videos based on what we learned from the survey. We hope this survey-driven content contributes to the information available to those affected by CF and helps you all connect with others who walk the same path.
Sharing your story can make a difference, and we believe each story can change how others understand life with CF.
Still have questions? Comment below, or email us at firstname.lastname@example.org for more information.
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