Improving Clinical Trials Guided by the Patient Experience Survey

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* 1. Have you been diagnosed with Narcolepsy (type 1 or type 2) by a medical professional?

Yes

If no, please refrain from continuing this survey. Thank you for your time.

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* 2. Has your sleep doctor ever discussed current research or clinical trials with you?

Yes

Other (please specify)

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* 3. Have you ever participated in a clinical trial?

Yes

If you answered no to ever participating in a clinical trial for narcolepsy, please skip to Question 10.

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* 4. How did you come across the clinical trial?

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* 5. Why did you ultimately decide to participate in a clinical trial?

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* 6. What was the most time-consuming process in participating in a clinical trial?

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* 7. What was the biggest hurdle in joining a clinical trial?

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* 8. How simple was it to be reimbursed for study related costs?

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* 9. How long after the study were you compensated for your participation?

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* 10. How much time would you be willing and/or able to miss work for a clinical trial?

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* 11. Would you be willing to stop your other medications to participate in the trial?

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* 12. What would be fair compensation for your participation $__/clinic visit?

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* 13. Would you be willing to retake your sleep/nap test (PSG/MSLT) to participate in a trial If it was covered by the pharma sponsor?

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* 14. How much would the following impact your interest in participating in a trial?

	Strong Negative Impact	Somewhat Negative Impact	It would not impact my decision	Somewhat Positive Impact	Strong Positive Impact
Having to complete multiple nap tests while on study	Having to complete multiple nap tests while on study Strong Negative Impact	Having to complete multiple nap tests while on study Somewhat Negative Impact	Having to complete multiple nap tests while on study It would not impact my decision	Having to complete multiple nap tests while on study Somewhat Positive Impact	Having to complete multiple nap tests while on study Strong Positive Impact
Having to stop all other medications for the treatment of narcolepsy to participate	Having to stop all other medications for the treatment of narcolepsy to participate Strong Negative Impact	Having to stop all other medications for the treatment of narcolepsy to participate Somewhat Negative Impact	Having to stop all other medications for the treatment of narcolepsy to participate It would not impact my decision	Having to stop all other medications for the treatment of narcolepsy to participate Somewhat Positive Impact	Having to stop all other medications for the treatment of narcolepsy to participate Strong Positive Impact
Having multiple blood draws on study	Having multiple blood draws on study Strong Negative Impact	Having multiple blood draws on study Somewhat Negative Impact	Having multiple blood draws on study It would not impact my decision	Having multiple blood draws on study Somewhat Positive Impact	Having multiple blood draws on study Strong Positive Impact
Being able to access study drug for free after the study	Being able to access study drug for free after the study Strong Negative Impact	Being able to access study drug for free after the study Somewhat Negative Impact	Being able to access study drug for free after the study It would not impact my decision	Being able to access study drug for free after the study Somewhat Positive Impact	Being able to access study drug for free after the study Strong Positive Impact
Getting assistance in paying for other prescription medications for narcolepsy after study	Getting assistance in paying for other prescription medications for narcolepsy after study Strong Negative Impact	Getting assistance in paying for other prescription medications for narcolepsy after study Somewhat Negative Impact	Getting assistance in paying for other prescription medications for narcolepsy after study It would not impact my decision	Getting assistance in paying for other prescription medications for narcolepsy after study Somewhat Positive Impact	Getting assistance in paying for other prescription medications for narcolepsy after study Strong Positive Impact
Getting medical attention and testing at no cost	Getting medical attention and testing at no cost Strong Negative Impact	Getting medical attention and testing at no cost Somewhat Negative Impact	Getting medical attention and testing at no cost It would not impact my decision	Getting medical attention and testing at no cost Somewhat Positive Impact	Getting medical attention and testing at no cost Strong Positive Impact
Having first access to a new potential treatment option	Having first access to a new potential treatment option Strong Negative Impact	Having first access to a new potential treatment option Somewhat Negative Impact	Having first access to a new potential treatment option It would not impact my decision	Having first access to a new potential treatment option Somewhat Positive Impact	Having first access to a new potential treatment option Strong Positive Impact
Working with your established sleep doctor while on the study	Working with your established sleep doctor while on the study Strong Negative Impact	Working with your established sleep doctor while on the study Somewhat Negative Impact	Working with your established sleep doctor while on the study It would not impact my decision	Working with your established sleep doctor while on the study Somewhat Positive Impact	Working with your established sleep doctor while on the study Strong Positive Impact
Your established sleep doctor talking to you about current research options	Your established sleep doctor talking to you about current research options Strong Negative Impact	Your established sleep doctor talking to you about current research options Somewhat Negative Impact	Your established sleep doctor talking to you about current research options It would not impact my decision	Your established sleep doctor talking to you about current research options Somewhat Positive Impact	Your established sleep doctor talking to you about current research options Strong Positive Impact

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* 15. Of the following, which option would make the biggest impact on your potential participation in a clinical trial:

Time on study

Travel to study site

Study Follow up

Sleep Tests

Lab work and other medical tests (i.e. pregnancy tests, illegal drug tests, ECG, etc.)

Possibility of being on placebo for length of time

Total Compensation

Having to stop other medications