Now Available: Symptom Assessment Survey
- PSC Partners Patient Registry
- Aug 20
- 1 min read
The Registry team is excited to announce that a new Symptom Assessment Survey is now available in the Registry. Developed by the PSC Partners Symptom Assessment Project, this survey measures three major symptoms of PSC: fatigue, brain fog, and liver pain.
If you are an adult with PSC* and have experienced ANY or ALL of these symptoms in the past seven days**, whether your symptoms were mild or severe, please log into the Registry and take this survey.
* Including post-transplant with recurrent PSC.
** If you have NOT had any of these symptoms in the past seven days, please wait to take the survey. You can take it later on if you are experiencing these symptoms.
ABOUT THE SURVEY
Registry participants helped create this new assessment tool. Work began in 2022 with the input of focus group volunteers, recruited through the Registry. Years of detailed interviews with many people living with PSC shaped these tools into the questionnaires you can now view in the Registry.
By completing this survey, you provide an important piece of evidence to show these questionnaires are effective tools. This supports the goal of using them in clinical trials, so researchers can show that a treatment improves these symptoms. Your voice directly supports development of new treatments for PSC.
Read more about the survey and the research team in a recent VIADUCT newsletter.
Thank you in advance for your participation!
If you have not logged into the Registry since it moved to an updated platform in March 2024, you will need to reset your password using the “Forgot your password?” feature on the login page.