Tell me about CoPE...
What is the CoPE study?
CoPE stands for vocal Cord Paralysis Experience. This is a survey study that has been funded by the National Institutes of Health. Participants will consent to answer questions about their health history and experience with vocal cord paralysis several times over a 6 month period. This study can be completed from home, on your computer, laptop, tablet, or other smart device.
Why should I participate?
CoPE providers are dedicated to understanding what it is like to live with vocal cord paralysis. We will review your answers in order to help us better care for people who have vocal cord paralysis. By taking our survey, you will be helping future patients who are diagnosed with vocal cord paralysis!
Will I be paid for my time?
Yes! After you complete the first survey, you will be sent a check for $50. After that, each time you complete a survey, you will receive $30. Participants have the opportunity to earn up to $140 in 6 months.
Do I have to make extra doctor's visits in order to participate? What if I don't have time to get to my clinic?
No extra visits to the doctor’s office are required to participate in the CoPE study! In fact, you can participate from anywhere that you have access to an internet or data connection (your home, your work place, the park…the world is yours!). Your doctor is responsible for giving you the study brochure with a passcode to participate. There will be no changes in your care plan because of this study.
How long will this study take?
Participants will answers up to five (5) surveys over a period of 6 months. The first survey is the longest and will take up to 45 minutes. Follow-up surveys should only take 5-10 minutes. Expect to spend a total of 90 minutes over 6 months.
How do I join?
Can I Join The Study?
There is just one thing we need to confirm before you can participate:
Did your doctor provide you with a study brochure and passcode?
If the answer is yes, please proceed to our survey website. You can access it here.
If you have not received a brochure from your doctor, you can see if they are part of the CoPE Collaborative here. If they are part of CoPE, ask them for a brochure the next time you are in the office.
I have vocal cord paralysis but my doctor is not a part of CoPE. Can I still participate?
Not at this time. If your doctor is interested in joining the CoPE Collaborative, they can contact us here for more information.
I think I have vocal cord paralysis. Can I participate?
To participate in this NIH funded study, you must be referred by a CoPE provider who will first confirm your diagnosis. If you do not have a confirmed vocal cord paralysis, you cannot participate in this study.
Other study questions...
I received a brochure from my doctor. How do I consent to participate?
You can access the survey site here. You will be asked to enter the passcode from your brochure and your email address. You only need to consent the first time you access the survey and the website will walk you through the process. If you have questions about the consent, please contact the study coordinator, Cara Damico Smith.
Can I take all 5 surveys in one sitting?
No. We want to measure how your condition changes over time so we will send you a new survey every couple of months. You can see a timeline of the study here.
How will I know when it's time to take the next survey?
When you sign up to participate in the study, you will provide us with your email address. We have partnered with the University of Wisconsin Survey Center to send you all CoPE surveys. They will email you when it’s time to take the next survey. If you have questions about accessing your survey or when you should take the next one, please contact the Survey Center Administrator, Margarete Wichmann at (855)-233-3750 or firstname.lastname@example.org.
How and when will I get paid?
The University of Wisconsin Survey Center will send you a check after you complete each survey. For questions about payment, please contact the Survey Center Administrator, Margarete Wichmann at (855)-233-3750 or email@example.com.