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Tutorial: Creating a New Registry Account

Please note this tutorial is only for those who do NOT have an existing Registry account. If you have previously created an account at any time, follow the Account Recovery Tutorial to access your account and recover the login info if needed. Duplicate accounts create inaccuracies in the data, and it takes considerable effort for the Registry team to identify and remove these duplicates.

There are separate instructions for Patients and for Caregivers, including those registering on behalf of a lost loved one. Select the appropriate tab below.

If you encounter any difficulties or have any questions, please contact

Note: The Registry supports Apple Safari, Google Chrome, and Microsoft Edge web browsers. If you encounter technical issues on another browser, it is recommended to switch to an officially-supported browser.

Enter the Registry Login Portal at this link, or click the "Join Now" button in the upper right corner of the Registry homepage.

You will arrive at this page:

Fill out your basic information, and carefully select which account type applies to you. The steps here are for Patient accounts; if you are a Caregiver, or someone who has lost a loved one, please select the "Caregiver/Non-Patient Accounts" tab in the upper menu. These accounts have access to different features, and the instructions for registering are different.

Shortly after submitting, you will receive an email from, similar to the one shown below. Follow the email link to create a password, then you can sign in and finish the registration process.

 The email should arrive in less than a few minutes. Be sure to check your spam folder if you do not see it!

Read and accept the Terms of Use for Matrix, the platform that is the new home to the Registry.

Carefully read through the PSC Partners Informed Consent Form to understand your participation and decide whether to accept. If you do, fill out the information at the bottom to provide your informed consent.


It is your choice to accept any portion of the consent form. While you must answer all the questions to complete the form, you only need to say "yes" to the first 3 questions and provide your digital signature to join the Registry.

Fill out your General Information (Demographics and Other Information).

To enter your birthday:

  • Press the calendar icon in the input bar.

  • In the dropdown menu that appears, press the top left button with the year repeatedly until the year selection pops up.

  • Use the left/right arrows on the top right of this submenu to narrow down to your birth year, then you can select the birth month and day.

When filling out the "Diagnosis" section, carefully select the option that best applies to you.

You may skip the “Clinician” info; this is not currently used by the Registry. There will be a separate survey if you wish to include a healthcare provider on the Registry’s Physician Map.

If you have been formally diagnosed with PSC, provide documentation confirming your diagnosis. If you do not have documentation readily available, you may always return to this step later from the Registry Dashboard by scrolling past the upload prompt and clicking on the small checkbox below.

Acceptable records must include the Patient name and state they have PSC. Examples include, but are not limited to, MRCP, ERCP, and physician reports.


Accepted file types include JPG, JPEG, GIF, PNG, APNG, TIF, TIFF, BMP, and PDF.

Once you have uploaded a file, or selected the checkbox to upload later, press "Save" and then press "Finish".

Please contact if you have any questions or encounter any difficulties providing this documentation.

You will know you have successfully created an account when you are taken to the Dashboard shown below.

Your account is now created! You can now fill out surveys, including the Clinical Survey, which is the heart of the Registry. To learn more about how to complete surveys and access all the features of the Registry user portal, please view the tutorial on Registry Account Features. (Note: this tutorial will be available soon!)

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