Community Survey Review Ad-Hoc Group

The Community Voice Team would like to invite adults with CF and parents to join the Community Survey Review Ad-Hoc group.

We are piloting this ad-hoc group to create an opportunity for folks to provide feedback on surveys prior to deployment to help ensure these surveys are relevant, lay-friendly, and meaningful. We are looking for 10 individuals with diverse perspectives.

Click here to learn more about the expectations of the Community Survey Review Ad-Hoc Group.

By filling out this survey, you agree to have your responses and your Community Voice profile read by the Community Voice team and future project partners, which may include people outside of the CF Foundation. If you have any questions or concerns, please contact communityvoice@cff.org.

If you have any questions or concerns, please feel free to contact communityvoice@cff.org.

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* 1. First Name

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* 2. Last Name

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* 3. Primary Email Address

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* 4. Which of the following apply to you?
Please select all that apply

I am personally living with cystic fibrosis

I am the parent of someone living with cystic fibrosis

I am a caregiver of someone living with cystic fibrosis

I am the spouse/partner of someone living with cystic fibrosis

I have lost a loved one to cystic fibrosis

I have an immediate family member living with cystic fibrosis

Other (please specify)

None of the above

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* 5. What is your/your loved one's age?

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* 6. What is your current gender identity?
Why we ask this question: we want to make sure we hear from all communities and would like to ensure gender diversity in our recruitment.

Woman

Man

Prefer not to answer

Prefer to self-describe

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* 7. What is you/your loved one's racial or ethnic identity?
Please select all that apply.
Why we ask this question: we want to make sure we hear from all communities and would like to ensure racial and ethnic diversity in our recruitment.

African-American/Black

African or Afro Caribbean

White or Caucasian

Hispanic or Latinx

Middle Eastern or North African

Native American

Alaska Native

Native Hawaiian or other Pacific Islander

East Asian

South Asian

Southeast Asian

None of the above, please specify...

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* 8. Are you/your loved one eligible for a CFTR modulator?
CFTR modulators include Kalydeco®, Orkambi®, Symdeko®, or Trikafta®

Yes, eligible and currently taking a CFTR modulator

Yes, eligible but not currently taking a CFTR modulator

No, eligible for a CFTR modulator due to CFTR mutation

No, eligible for a CFTR modulator due to lung transplantation status

Don't know/Not sure

Prefer not to answer

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* 9. What time zone do you live in?

Pacific

Mountain

Central

Eastern

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* 10. What are your clinical trial experiences?
We would like to hear from individuals with and without clinical trial experience

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* 11. Do you have experience reviewing scientific documents?

Yes

Other (please specify)

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* 12. Do you have the ability to access Microsoft Office products (Word, Excel, PowerPoint, etc.)?
We are open to utilizing additional platforms to ensure all members can participate in this work.

Yes

Comment

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* 1. First Name

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* 2. Last Name

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* 3. Primary Email Address

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* 4. Which of the following apply to you?Please select all that apply

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* 5. What is your/your loved one's age?

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* 6. What is your current gender identity?Why we ask this question: we want to make sure we hear from all communities and would like to ensure gender diversity in our recruitment.

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* 7. What is you/your loved one's racial or ethnic identity?Please select all that apply.Why we ask this question: we want to make sure we hear from all communities and would like to ensure racial and ethnic diversity in our recruitment.

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* 8. Are you/your loved one eligible for a CFTR modulator?CFTR modulators include Kalydeco®, Orkambi®, Symdeko®, or Trikafta®

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* 9. What time zone do you live in?

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* 10. What are your clinical trial experiences? We would like to hear from individuals with and without clinical trial experience

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* 11. Do you have experience reviewing scientific documents?

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* 12. Do you have the ability to access Microsoft Office products (Word, Excel, PowerPoint, etc.)? We are open to utilizing additional platforms to ensure all members can participate in this work.

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* 13. Please tell us why you are interested in participating in this group.

* 4. Which of the following apply to you?
Please select all that apply

* 6. What is your current gender identity?
Why we ask this question: we want to make sure we hear from all communities and would like to ensure gender diversity in our recruitment.

* 7. What is you/your loved one's racial or ethnic identity?
Please select all that apply.
Why we ask this question: we want to make sure we hear from all communities and would like to ensure racial and ethnic diversity in our recruitment.

* 8. Are you/your loved one eligible for a CFTR modulator?
CFTR modulators include Kalydeco®, Orkambi®, Symdeko®, or Trikafta®

* 10. What are your clinical trial experiences?
We would like to hear from individuals with and without clinical trial experience

* 12. Do you have the ability to access Microsoft Office products (Word, Excel, PowerPoint, etc.)?
We are open to utilizing additional platforms to ensure all members can participate in this work.