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 is thus launching this patient-reported and IRB-approved 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. You have the option to provide your data without identifying yourself; the survey tool does not record your email, IP address, or device identifier. The last question in the survey gives you the option to provide an email address if you so choose. If you provide an email address, it would be used only by the HIPAA-trained PSC Partners Patient Registry Coordinator to contact you about future studies on the long-term impact of COVID-19 on PSC.

Please strongly consider either sharing your email contact information OR joining the PSC Partners Patient Registry and completing the clinical survey (or updating). This is the only way we can notify you of research opportunities around PSC/COVID-19. www.pscpartnersregistry.org

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
registrycoordinator@pscpartners.org