A new survey is available in the Registry: the PSC Flare or Cholangitis Attack Patient Survey. Why take a survey about PSC flares/cholangitis? Though those who live with PSC may know what a cholangitis attack feels like, surprisingly, the medical world has not agreed on a definition. That is why researchers need information from adult PSC patients about their experience with PSC flares/cholangitis. We request that patients, not caregivers, take this survey.
If you have ever experienced a PSC flare or cholangitis attack, whether your symptoms were mild or severe, please log in today to complete this survey!
Note: If you have never experienced a flare, or if you have previously completed this survey via Google Forms (see below), you don’t have to take this survey. If in the first few questions you respond that you took the survey before, or that you’ve never had a flare/cholangitis attack, the survey will stop there. If you are a Registry participant, by taking a couple of minutes to let us know that you have taken the survey already, we will know not to send you reminder emails to complete the survey.
If you’re not sure whether you previously took this survey, here is what the start of the survey looks like in Google Forms.
If you are not a Patient Registry participant, you are encouraged to join today and take this survey in the Registry after completing your account setup. If you do not wish to at this time, you can instead complete the PSC Flare or Cholangitis Attack Patient Survey through Google Forms. No identifying information (such as name, phone number, address, date of birth) is collected. Click on the SINGLE USE SURVEY button above to leave the Patient Registry site and complete the PSC Flare or Cholangitis Attack Patient Survey outside the Registry.
About the Survey
The survey will capture your symptoms before, during, and after your most recent PSC flare/cholangitis attack. This information will help characterize the prevalence and frequency of symptoms and the impact of these episodes on people living with PSC.
The survey will also include questions about the treatment and care you received, if sought, during your most recent PSC flare/cholangitis attack. Understanding your symptoms through your first-hand experience and from treatments you received during these episodes will help inform clinical trial design and is an important first step in establishing a better standard of care for those living with PSC.
To access the survey, log into the Registry here and find it on the Dashboard or in the Surveys tab on the left menu.
Again, patients should complete the survey for themselves. Caregivers should not complete it on behalf of their patient.
This survey has been developed by PSC Partners (based in the U.S.) and PSC Support (based in the U.K.) as part of their work with the PSC Forum Acute Cholangitis Working Group.
Thank you for your participation, which is critical in advancing PSC research.
Rachel Gomel, Patient Registry Director
Together, we are creating a world where a PSC diagnosis comes with a cure!
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