Improving Clinical Trials Guided by the Patient Experience
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1.
Have you been diagnosed with Narcolepsy (type 1 or type 2) by a medical professional?
(Required.)
Yes
No
If no, please refrain from continuing this survey. Thank you for your time.
2.
Has your sleep doctor ever discussed current research or clinical trials with you?
Yes
No
Other (please specify)
3.
Have you ever participated in a clinical trial?
Yes
No
If you answered no to ever participating in a clinical trial for narcolepsy, please skip to Question 10.
4.
How did you come across the clinical trial?
Medical Facility
University Campus or Programs
Narcolepsy Patient Advocacy Groups
Online Ad Campaign
Online Searching
Patient Support Groups
In conversation with other PWN (person with narcolepsy)
N/A
Other (please specify)
5.
Why did you ultimately decide to participate in a clinical trial?
6.
What was the most time-consuming process in participating in a clinical trial?
7.
What was the biggest hurdle in joining a clinical trial?
8.
How simple was it to be reimbursed for study related costs?
9.
How long after the study were you compensated for your participation?
10.
How much time would you be willing and/or able to miss work for a clinical trial?
11.
Would you be willing to stop your other medications to participate in the trial?
12.
What would be fair compensation for your participation $__/clinic visit?
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?
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
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Having to stop all other medications for the treatment of narcolepsy to participate
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Having multiple blood draws on study
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Being able to access study drug for free after the study
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Getting assistance in paying for other prescription medications for narcolepsy after study
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Getting medical attention and testing at no cost
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Having first access to a new potential treatment option
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Working with your established sleep doctor while on the study
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
Your established sleep doctor talking to you about current research options
Strong Negative Impact
Somewhat Negative Impact
It would not impact my decision
Somewhat Positive Impact
Strong Positive Impact
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