Tutorial: Creating a New Registry Account

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. You should provide YOUR information, not for the person who has PSC. Their info will be provided later in the registration process.

The steps below are for Caregiver Participants or someone who has lost a loved one (i.e., if you are registering to represent another person who has PSC). These accounts have access to slightly different features, but all the core features of the Registry are accessible no matter the account type.

Shortly after submitting, you will receive an email from registrycoordinator@pscpartners.org. Follow the "Create Password" link in the email to create a password, then you can sign in and finish the registration process. Here's what it looks like:

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.

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

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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.

You will know you have successfully created your Caregiver account when you are taken to the Caregiver Dashboard shown below. Follow the remaining steps to add or connect your PSC patient.

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​Press the "Add Patient" button to provide their basic information. If the patient is a minor, the patient is deceased, or you are the patient's Legally Authorized Representative, select the option "No, only a caregiver will access this account".

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IMPORTANT: If the PSC Patient is an adult, and you are not their Legally Authorized Representative, they must provide consent for themselves. Refer to Step 6b below for more information.

If the patient is an adult and you are not their Legally Authorized Representative, they must create their own account to provide consent.

You will be automatically taken to the Caregiver dashboard shown above. Press the "Add Patient" button to provide the patient's basic information. At this step, you MUST select the option "Yes, this patient will want to access their own account", even if you plan to manage their information in the future.

The patient will receive an email to create their account. They will need to accept the Terms of Use, and then will be asked to provide informed consent. Refer to the tab above for "Patient Accounts" in this tutorial for more details. Once this is completed by the patient, you will be able to manage their information.

If the patient previously created an account (i.e., BEFORE you created a Caregiver account and reached this step in the tutorial), please have the patient message the Registry Coordinator using the Messages tab in Matrix, or have them send an email to registrycoordinator@pscpartners.org. The Registry coordinator will need to manually link your Caregiver and Patient accounts together.

You will be taken back to the General Information section, where you will be prompted to specify your relationship to the patient. Press "Save" once you have done so.

If the patient is 18+ and required to create their own account (refer to step 6b), after they've provided their Informed Consent, this step should automatically trigger the next time you take any action in your Caregiver account. In this case, provide your relationship to the patient, press "Save", then "Finish", then you may skip to step 11 below. Step 8 must be completed by your patient during their account creation, and they will be prompted to complete steps 9-10. Alternately, you may complete steps 9 & 10 later from within your Caregiver account by going to the Patient's dashboard and selecting the "General Information" and "Documentation" sections, respectively.

This step only applies if you, the Caregiver, are registering on behalf of a minor, a deceased patient, or an adult patient for which you are the Legally Authorized Representative. If none of these apply, refer to Step 6b.

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 add the patient to the Registry.

This step only applies if you, the Caregiver, are registering on behalf of a minor, a deceased patient, or an adult patient for which you are the Legally Authorized Representative. If none of these apply, refer to Step 6b.

Fill out the general contact and demographic information of your represented PSC patient. See Step 5 above for how to enter their birthday.

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

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.

This step only applies if you, the Caregiver, are registering on behalf of a minor, a deceased patient, or an adult patient for which you are the Legally Authorized Representative. If none of these apply, refer to Step 6b.

If your represented patient has been formally diagnosed with PSC, provide documentation confirming their 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".

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Please contact registrycoordinator@pscpartners.org if you have any questions or encounter any difficulties providing this documentation.

Your account is now fully set up!

From here, you can either go to your Caregiver dashboard to manage your info, or to your Patient’s page. From the Caregiver dashboard, press the book icon in the far right:

Within the Patient dashboard, 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!)