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Tutorials & Instructional Videos

Browse the links below for more information on the Patient Registry and how to access and use the Registry!

Videos and written tutorials on how to join the registry and explore de-identified patient data are temporarily unavailable as they are being updated for the new Registry platform. These will be available soon.

Future tutorials will include:

  • how to upload your medical record

  • how to see and print or download your survey responses

  • how to explore the physician map and add your specialist to the map

Please send a note to for suggestions of tutorials you'd find helpful.

Registry Tutorials

Click on each link below to access a video and/or written tutorial.

These tutorials contain instructions for creating a new Registry Account. Two account types are available: Patient Accounts, and Caregiver Accounts, which are for users registering on behalf of a living or deceased PSC patient.

Other Instructional Videos

Launch Video

(2006) 3 min video explaining the need for a Patient Registry

Importance of Patient Registry

(2022) 3 min video on the importance of the Patient Registry. From a ROADMAP webinar.

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