Registry Overview

The PSC Partners Patient Registry is a digital platform where basic data on people living with PSC is collected and stored. Data is primarily collected through online surveys completed by the participant living with PSC, or a qualified caregiver. Confidentiality and privacy measures are built into the Registry to ensure participant privacy.

This data is then used to accelerate PSC research and advocate for the unmet needs of PSC patients. Researchers request de-identified patient data which is analyzed to gain new insights on PSC. Click here to view the current list of publications made possible through the Registry.

Researchers can also request the Registry's assistance in recruiting for a clinical trial or study. The Registry team identifies participants who best meet the study's inclusion and exclusion criteria and privately send these participants information about the study. The participants can then choose to contact the study team if they want to learn more and/or are interested in joining the study. This practice ensures that the participant's identity is withheld from researchers and that it is solely the participant’s choice to join a study.

The Registry also provides current news on clinical trials and studies in a few additional ways: the Ongoing Clinical Trials page, the Publications Related to Clinical Trials page, the VIADUCT Newsletter, and News posts. This information is publicly available under the "NEWS AND RESOURCES" and the “CLINICAL TRIALS” sections on the navigation menu.

No identifying data ever leaves the Registry.

The Registry’s operating software, Matrix, was designed and is operated in accordance with applicable US privacy protection provisions of HIPAA,¹ the European GDPR,² and FDA regulations.³ These regulations require specific documented operational controls and security procedures. Information that you provide to the Registry via the Matrix website is encrypted* and stored on secure servers with restricted physical access.

To further protect the best interests of Registry participants, the Registry is annually reviewed by an Institutional Review Board (IRB) and all Registry team members have current HIPAA training.

Any personal information that could be used to identify you or your family is labeled as Personally Identifiable Information (PII). Your PII is securely stored and encrypted. Only authorized Registry staff can access your PII and contact you if needed. Information that has had all PII changed to a code is called "de-identified." Only de-identified data is ever shared with researchers.

¹HIPAA: Health Insurance Portability and Accountability Act of 1996

²GDPR: General Data Protection Regulation (GDPR)

³FDA regulations: Food and Drug Administration Title 21 of the Code of Federal Regulations Part 11 (21 CFR part 11)

*Encryption means that even if a third party were to obtain access to the data, they must have access to a long “passkey” to decrypt and view the original information. Without having the passkey, it takes decades for even the most powerful supercomputers to figure out the original passkey.

Clinical Survey
The Clinical Survey is the heart of the Registry. This survey collects information on a wide range of topics, such as PSC diagnosis, symptoms and complications, other diseases, family history, and more. A new Clinical Survey is available each year so that the Registry can track changes over time.

Health Equity Survey

The Center for Disease Control defines health equity as the state in which everyone has a fair and just opportunity to attain their highest level of health. This survey seeks to build an understanding of the impact of PSC and barriers to receiving high quality care.

PSC Flare or Cholangitis Attack Patient Survey

Many people living with PSC are intimately familiar with what a cholangitis attack feels like. However, there is not yet a widely agreed-upon medical definition for this major complication associated with PSC. This survey aims to capture participants' history of cholangitis and symptoms during their most recent attack.

Healthcare Provider Submission Form

The PSC Partners Registry keeps a map of healthcare providers submitted by Registry participants. By submitting a provider via this short form, Registry participants can help other people living with PSC to find a doctor who is familiar with PSC or who specializes in PSC care.

For the Bereaved

If you have a loved one who had PSC and has since passed away, whether due to PSC or not, you can create a "Person who has lost a loved one" profile to access this survey. Everyone with PSC is an important piece of the PSC puzzle, and their history is important to capture. We acknowledge and appreciate the generosity of those who have lost someone with PSC.

The Registry has a wealth of other tools for you. To access these, you must create or log in to your Registry account. Detailed tutorials are available to get you started.

View Summarized Survey Responses

Registry participants can view a summary of other participants' de-identified responses to many survey questions. For instance, you can see the breakdown of age of PSC diagnosis across the whole Registry, or the number of Registry participants who have a family member living with PSC. This is available through the "Survey Analysis" tab in the navigation menu of the Registry dashboard.

Health Info Tracking

Basic Health Info: Log your current and past medications and supplements, treatments and medical procedures, labs/tests, and more.
Symptoms and Activities: Log common PSC symptoms (or add your own) and activities such as exercise.
Journal: Keep track of notes from doctor visits, prepare your questions to ask your doctor, or save notes on whatever else helps you keep up with your PSC care.

Multiple Language Support

The Registry Dashboard supports English, Spanish, French, Italian, and German languages. Surveys are currently only available in English; Spanish and French versions will be available later in 2025.

Electronic Health Record (EHR) Import

If your healthcare providers use an EHR system, the Registry platform supports importing data from many of the common EHR systems. You may select which records you wish to import into the Registry.

To learn more about the Registry, please visit the Registry's Frequently Asked Questions (FAQ). You can also contact the Registry team for any questions you have!

PRIMARY SCLEROSING CHOLANGITIS PATIENT REGISTRY

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