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What is the Registry not asking? 
An anonymous poll for PSC patients and caregivers regarding Registry survey questions

Your perspective about how PSC impacts you is invaluable, and you are encouraged to think broadly to consider all ways in which you are affected by your or your loved one's PSC. What important questions is the Registry NOT asking you in the Clinical Survey?

To remind yourself of the questions found there:
- Retake the Clinical Survey (if you haven't updated in the last year) OR
- View the Clinical Survey questions by clicking on "Download Results" next to the survey name in your PROFILE.

Login to your Registry account to update or view the Clinical Survey and then return to this page to complete the survey.

You may respond to any or all of the questions below. None are required, but please share your thoughts.

No identifying information is being collected.

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Is there something else the Registry could be capturing about your physical symptoms and complications?
The Clinical Survey currently asks questions about numerous common symptoms and complications with a particular focus on pain, fatigue, itching, and sleep disturbances.
Is there something else the Registry could be capturing about your mental health?
The Registry asks about depression, sleep disturbances, and whether you receive counseling or treatment for these.
What else could the Registry ask about how PSC affects your quality of life?
The Clinical Survey asks questions about how common symptoms impact your quality of life.
What Registry questions would capture how your experience with family/social support impacts you?
The current Clinical Survey asks how many people live in your home and how often you are able to participate in social interactions.
What are additional medication, supplement, or nutrition questions that the Registry might ask?
Currently, there are general questions about these items plus more specific questions about the medications ursodiol and oral vancomycin.
What Registry survey questions would capture your experience with medical Insurance?
Current questions center around what type insurance you have, if any, and whether you have experienced delays in access to care.
Please suggest COVID and COVID vaccination questions.
Current questions address diagnosis and complications only; they were developed before the vaccines were available.
What questions might capture data about perceived PSC triggers?
There are currently no questions asking respondents for their perceptions about what may have triggered their own PSC.
Are there other Registry questions that could be asked about current or past clinical trial participation or interest in future participation?
The Clinical Survey currently has basic questions about these topics and about biospecimens that may have been donated.
Do you have suggestions about other types of Registry questions not addressed in the topics above?
Your suggestions are valued!
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