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Research Voice Sign Up Form
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1.
First Name
(Required.)
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2.
Last Name
(Required.)
*
3.
Primary Email Address
(Required.)
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4.
Connection to CF
(Required.)
Person with CF
Parent of a person with CF
Spouse of a person with CF
Sibling of a person with CF
Other (please specify)
5.
What is your age?
17 or younger
18-20
21-29
30-39
40-49
50-59
60 or older
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6.
What types of projects are of interest to you? (select all that apply)
(Required.)
Educating the community about research
Giving input on the design and importance of studies
Looking at studies from an ethical and safety perspective
Sharing results of studies
Transplant research
Other (please specify)
7.
Briefly describe your experience with research.
*
8.
Have you (or your family member with CF) participated in a study?
(Required.)
Yes
No
I don't know
9.
What is the highest level of education that you have completed?
High school diploma
Some college
Associates/ technical degree
Bachelor's degree
Graduate degree
Other (please specify)
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10.
Are you willing to do a small amount of online, self-paced training to prepare you for Research Voice activities?
(Required.)
Yes
No
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11.
How many hours per month would you be willing to commit to Research Voice projects?
(Required.)
1 hour per month
2-4 hours per month
More than 4 hours per month
12.
What additional skills, qualifications, or experiences would you like to share?
In some cases, input may be needed from people who would meet specific study eligibility criteria.
If you feel comfortable doing so, please indicate the following
:
13.
(Optional) Are you (or your family member) currently eligible for:
Yes
No
Unsure
Orkambi
Yes
No
Unsure
Kalydeco
Yes
No
Unsure
Symdeko
Yes
No
Unsure
14.
(Optional) Based on what you have heard or read, do you have one of the mutations that could be eligible for the triple combination therapy?
Note: individuals with one copy of F508del are likely to be eligible for the triple combination therapy, regardless of their second mutation.
Yes
No
Unsure
15.
(Optional) Have you (or your family member) ever had a transplant?
Yes
No
