In March of 2020, various registries were created to compile data on the effect of COVID-19 on individuals with liver disease. However, none were PSC-specific. PSC Partners believes it will be important to collect information on those of us who have/had/suspect having COVID-19 and hence have launched a 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 invite PSC patient groups worldwide to join us in sharing the survey.

Complete survey here.