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Health Equity in PSC Survey

Health equity is the state in which everyone has a fair and just opportunity to attain their highest level of health*.

The mission of PSC Partners is to drive research to identify treatments and a cure for PSC while providing education and support for those impacted by this rare disease.

Why are we surveying our community about health equity topics?

  • PSC can affect anyone.

  • We need a better understanding of who is impacted by PSC and the barriers that can impede your care.

  • PSC Partners’ goal is to facilitate ways to reduce these barriers.

  • PSC Partners needs your help. Please complete this brief survey.

  • Your participation will make a difference in the care of people living with PSC, as well as provide vital information in the search for treatments and a cure.

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. 

Are you... 


A PSC Partners Patient Registry participant? Please complete the Health Equity in PSC Survey through the Registry. Click REGISTRY PARTICIPANT LOGIN to get started now. Log in to your registry account, complete the Health Equity in PSC Survey, and also update your Clinical Survey. This option saves you time: the Health Equity in PSC Survey in the Registry has fewer questions because you won't be asked to provide information that has already been collected in the Registry. --OR--


Not yet a PSC Partners Patient Registry participant? If you are not a participant in the Patient Registry, you are invited to join today and complete the Health Equity in PSC Survey through the Registry. Benefits of doing so include:

  • Provides a more complete picture of your PSC diagnosis and experience because your response to this health equity survey within the Registry will be one among other surveys. 

  • You can update your information over time.

  • You will receive information about opportunities to participate in research, clinical trials, medical advances and other news from the Registry

  • Continues to strengthen the power of the Registry by demonstrating Registry engagement of the PSC community.

Click on JOIN REGISTRY NOW to set up your account, complete the NEW Clinical Survey and the Health Equity in PSC Survey. --OR--


Not interested in PSC Partners Patient Registry participation at this time? You can complete the Health Equity in PSC Survey without being a Patient Registry participant. With this option, your responses will fulfill a single-use purpose as no identifying information (such as name, phone number, address, date of birth) is collected. Registry team will not be able to contact you directly to give you future survey results or to let you know about opportunities to participate in research. Click on SINGLE-USE SURVEY button above to leave the Patient Registry site and complete the Health Equity in PSC Survey outside the Registry.

Each of these three options will support the purposes of this survey! For questions or clarification, please email registrycoordinator@pscpartners.org. Thank you!

*Centers for Disease Control and Prevention https://www.cdc.gov/healthequity/whatis/index.html

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