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PSC Partners Patient Registry

The PSC Partners Patient Registry is a secure online platform that is a repository of health information provided by those who are affected by primary sclerosing cholangitis. The information is patient-reported, meaning that a person with PSC or their authorized caregiver enters their health information directly on the Registry and by completing Registry surveys. This data is then used to accelerate PSC research and advocate for the unmet needs of PSC patients.

A benefit to being a participant in the Registry is receiving information about PSC research studies or cynical trials that you may be eligible to join. The Registry provides current news on clinical trials and studies in a few additional ways: through PSC clinical trial listings, sharing PSC-related publications, and through the Registry newsletter (The VIADUCT).

The PSC Patient Registry was created in 2014 with the collaboration of the US National Institutes of Health (NIH) Office of Rare Diseases Research (ORDR) and the US National Center for Advancing Translational Sciences (NCATS).

Why is a PSC Patient Registry so important?

Joining the PSC Partners Patient Registry is a crucial step towards finding a cure for primary sclerosing cholangitis.

Since PSC is a rare disease, a patient registry provides researchers with valuable data to better understand the condition, its progression, and its possible causes. By compiling information on as many patients as possible, researchers can better identify patterns, risk factors, and potential treatment approaches that might not be apparent in smaller studies.The Registry is open to international participants which allows for the collection of information from a large and diverse set of participants.

The Registry helps in the development of new treatments and clinical trials. By providing detailed information on how PSC affects different individuals, the Registry can assist pharmaceutical companies and researchers in designing clinical trials and targeting therapies.

Researchers and pharmaceutical companies will invest time and money if they have sufficient information to analyze. That’s why providing as much patient data as possible is crucial. Patient registries can lead directly to improved treatments and a better quality of life.

You and your experience are an important piece of the PSC puzzle!

If a world where a PSC diagnosis comes with a cure is the end goal, then join the Registry today. Every PSC patient’s participation is important to push research forward.

How is the data collected and stored?

PSC patients or their designated caregiver enter information and complete online surveys that cover questions related to their medical history and symptoms. Patients are asked to upload a test result or document to confirm their PSC diagnosis. All data is maintained in a secure online environment.

The Registry was designed and is operated to meet privacy protection laws and regulations.¹ These regulations require specific documented operational controls and security procedures. Information that is entered into the Registry is encrypted2 and stored on secure servers with restricted physical access.

Additionally, for the protection of Registry participants, the Registry is reviewed each year by an Institutional Review Board (IRB)3 and each PSC Partners Registry staff member has up to date HIPAA training.

Any personal information that could be used to identify the PSC patient or their family is labeled as Personally Identifiable Information (PII). Your PII is securely stored and encrypted. Only authorized Registry staff will be able to 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.

Participants can access and update their own information at any time. They can also withdraw from the registry at any time and ask for their data to be deleted.

Who has access to the registry?

The PSC Patient Registry is intended to serve patient, physician, and research communities. Researchers may request access to de-identified patient data to analyze and publish findings about PSC. The Registry never reveals a participant’s identity to any outside researcher.

Researchers can request the Registry’s help in recruiting for a clinical trial or study. The Registry team will find the Registry participants who best meet the criteria of the researcher and will then directly contact these participants with information about the opportunity. It is then up to each patient to decide if they wish to contact the research study team to learn more and/or if they are interested in joining the study.

Frequently Asked Questions

  • A person who has, had, or is suspected of having PSC
  • A person who is post-transplant due to PSC
  • A person who has recurrent PSC post-transplant

You can participate in the Registry if you, the PSC patient, or the PSC patient you represent, has ever been diagnosed with PSC.

  • Patient : Patients over the age of 18 who understand the consent form (and who do not have a legal guardian) are eligible to join the registry on their own
  • Caregiver :
    • Legally authorized representative of an adult patient
    • A parent or legal guardian of a minor
    • A person who has lost a loved one who had PSC
  • Minors : Parent or legal guardian of a minor must give consent for the patient to join

There are a minimum of two steps to join the Registry

  1. A Registry account must be created – account creation takes a few minutes and this step includes reviewing the informed consent document (this time will vary from person to person).
  2. Complete the current Clinical Survey – the first time a participant completes the Clinical Survey, it takes a minimum of 30 minutes to complete. The survey does not need to be completed at one sitting.
  • Participants will be asked to review and update their Clinical Survey responses annually. Unless there have been a lot of health changes over the year, this should take much less time than the first time it was completed.
  • Additional surveys – Beyond the Clinical Survey which is the backbone of the Registry, there are additional surveys that participants are asked to complete from time to time. These surveys typically require much less time to complete than the Clinical Survey. Participants are encouraged to complete all additional surveys but they are completely optional.

In addition to supporting research, participants will have access to a variety of tools to help with day to day management of PSC.

  • Patient : Patients over the age of 18 who understand the consent form (and who do not have a legal guardian) are eligible to join the registry on their own
  • 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. The symptom tracker can be a useful tool to share with your healthcare provider.
    • 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 platform 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.
  • 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 how many other Registry participants have a family member living with PSC.