This survey can be completed by a PSC patient or a caregiver on behalf of the PSC patient. In this survey, the PSC patient is referred to as the “participant.” 

Please be sure that this survey is completed JUST ONCE for each participant. 

No identifying information (name, email, date of birth, etc.) is being collected in this version of the Health Equity in PSC Survey. PSC Partners will not be able to match your responses to your identity. For protection of patients' rights, the Institutional Review Board (IRB) has reviewed the survey and the manner of distribution and has affirmed that it is exempt from US regulatory requirements under 45 CFR 46.104(2)(2)(i) because no identifying information is being collected. 

For questions or clarification, please email registrycoordinator@pscpartners.org. Thank you!