We are witnessing a surge in COVID-19 registries for liver diseases, but none are PSC-specific. We believe it will be important to collect information on those of us who have/had/suspect having COVID-19. PSC Partners has thus launched (April 2020) a patient-reported COVID-19 PSC survey.
We hope very few of us will have COVID-19, but knowing the impact of COVID-19 on our PSC community may bring a new light on PSC. We will share the aggregated information publicly and only in a de-identified format.
Please participate if you have/had/suspect having COVID-19 and you have PSC or had a liver transplant due to PSC. We all know that the complications of COVID-19 can be extremely serious. If you are a caregiver of a PSCer who is unable to complete the survey or is deceased, please complete the survey on their behalf.
We are notifying PSC Partners Registry participants of this survey through email, as well as disseminating the survey through social media, and newsletters. We invite PSC patient groups worldwide to join us in sharing the survey.
This survey should take no more than 10 minutes to complete. Your privacy is protected because this survey collects no identifying information (for example, we do not collect name, birthdate, or email), and the survey tool does not record your IP address or device identifier.
To take the survey, please click here.
During these very difficult times, our motto, “Together in the fight, whatever it takes!” is a reminder that none of us in the PSC community are alone.
Thank you for joining us!
Rachel Gomel
PSC Partners Seeking a Cure
Registry Director and Registry Coordinator
