The New Registry Home

In March 2024, the Registry opened under a new home! Click here to read a message from the Registry Director Rachel Gomel about the upgrade.

Below are short guides for both new and existing Registry Participants on what to do to access the new Registry dashboard, take advantage of the new features in the Registry, and contribute your voice to help move research forward! Click on each step for more detailed information.

Guide For Existing* Registry Participants

*An Existing Participant refers to a Registry Member who created an account February 2024 or earlier.

The vast majority of existing participants had their data securely migrated to the new system, including responses to previous surveys, uploaded proof of PSC diagnosis, and general profile information.

Your account is under the same email as before. For security reasons, before logging in to the new Dashboard for the first time, you must reset your password. The Account and Password Recovery Tutorial can guide you through this process.

After the one-time password reset and login, you will be asked to accept the Terms of Use for Matrix, the new platform that is home to the Registry.

You will be taken next to your General Information. Verify that this info is still correct and fill in any missing information. Most of this data will be pre-filled from your existing data.

You may be prompted to submit a Proof of PSC Diagnosis. If you previously submitted documentation of your PSC Diagnosis, you do not need to upload new documentation. The Registry still has your existing documentation. At this step, scroll down and select the small checkbox that says "I do not have any proof-of-diagnosis available to upload", then press "Save" and "Finish".

You will then be taken to your Registry Dashboard. From the Dashboard, you can see any incomplete surveys, such as the new 2024 Clinical Survey. Caregiver Participants can access the surveys by going to the Patient Dashboard.

Please note that there are new questions in the 2024 Clinical Survey, so even if you have taken the Clinical Survey before, responding to the 2024 Clinical Survey will provide valuable information.

Surveys do not need to be completed immediately, nor in one sitting; you can save a partially completed survey and return to it later from the Dashboard.

In addition to the core functions of the Registry, there are several new features in the new Dashboard. These include:

Symptoms and Activities, and Health Info tracking, all tailored for PSC patients
Journaling
A Document Center to upload medical documents, MRIs, school forms, genetic reports, and more
A Sharing Center to share your symptoms/activity/health info and other documents from the Registry with physicians and/or family

These additional features can help to aid you in your health management.

Guide for New Registry Participants

Thank you for your interest in joining the PSC Partners Registry! If you have not been a member of the PSC Partners Registry before, know that these upgrades mean a more secure, easy-to-use, and feature-filled Registry than ever before.

Please follow the Account Creation Tutorial to create your new Registry account.

Once your account is created, you will be taken to your Registry Dashboard. From the Dashboard, you can access all surveys relevant to you based on the information provided when creating your account. Caregiver Participants can access their patients' surveys by going to the Patient Dashboard.

There are several surveys available in the Registry. The 2024 Clinical Survey is the main survey that comprises the heart of the Registry.

Surveys do not need to be completed immediately, nor in one sitting; you can save a partially completed survey and return to it later from the Dashboard.

In addition to the core functions of the Registry, there are several new features in the new Dashboard. These include:

Symptoms and Activities, and Health Info tracking, all tailored for PSC patients
Journaling
A Document Center to upload medical documents, MRIs, school forms, genetic reports, and more
A Sharing Center to share your symptoms/activity/health info and other documents from the Registry with physicians and/or family

These additional features can help to aid you in your health management.

Frequently Asked Questions about the New Registry Home

Is my account and information still available? How do I access it?

The vast majority of existing participants had all existing data securely migrated to the new system, including responses to previous surveys, uploaded proof of PSC diagnosis, and general profile information.

All Existing User accounts are under the same email as before. For security reasons, when logging in for the first time, all existing users must go through a one-time process to reset your password. There is an Account and Password Recovery Tutorial available to guide you through this process. If you no longer have access to this email or do not remember which email you used, the tutorial also includes instructions for resolving these issues.

What has changed in the Registry?

The Registry has moved from its previous home, managed by Invitae, to a new system managed by Matrix / Across Healthcare. The new system is more secure than ever before, and adds a wealth of new features, including:

Support for multiple additional languages
Integration with other digital health systems to share your data with physicians
A Document Center to upload medical documents, MRIs, school forms, genetic reports, and more
Optional tracking of symptoms, activities, medications, and adverse events for you to log and review your health history

In addition, the Registry Website has undergone a complete overhaul. New features include:

More detailed information on Clinical Trials
A new Researcher page where patients and researchers alike can view how researchers may securely request access to de-identified
An updated Physician Map, Glossary, and FAQ

New features are continually being added to both the Registry Dashboard and throughout the website. Keep checking back for more information!

I am trying to login/join, but I am getting a blank screen. What should I do?

The most likely cause of this issue is that you have accessed the Registry dashboard through an unsupported browser. Please try logging into the Registry through Apple Safari, Google Chrome, or Microsoft Edge.

If you encounter any trouble accessing the Registry or have any questions, please write to registrycoordinator@pscpartners.org. The Registry team is eager to support you in joining the Registry and in getting accustomed to our new home.