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Patient Registry

As more PSCers add their information to the Registry, researchers can conduct more PSC research and clinical trials leading to effective treatments and a future cure.

Patient Registry

Join the PSC Partners Patient Registry today! Here’s your chance to help speed up PSC research. Everyone's participation is important. The larger the PSC Patient Registry is, the more meaningful it can be for researchers from around the world. Read more about the registry below, then sign up as a patient or patient guardian.

What is the Registry?

The PSC Partners Patient Registry is a secure place to store information about those affected by PSC. All information entered into the registry is de-identified. This means that when a researcher requests information from the registry, no identifying information will ever leave the registry, including name, date of birth, address, or phone number.

All those diagnosed with PSC are encouraged to participate. Parents can join the Registry to enroll their child. A spouse can participate on behalf of their partner.

The individual's data collected includes information about diagnosis, family history, quality of life, medications, surgeries, other diseases, and patient demographics. It takes less than an hour to complete the patient survey. The registry coordinator is happy to help you complete your survey.

If you or your child appears to be a match for a study or a clinical trial, the registry coordinator will contact you. It would be your choice to connect with the researcher(s) to let them know if you are interested. 

Questions? 

Send an email to registrycoordinator@pscpartners.org

Why Was It Created?

The PSC Partners Patient Registry was initiated in response to the difficulty of locating PSC patients and PSC data to conduct research on our rare disease. Our aim with the Registry has been to add the patient’s voice to every facet of PSC research and to facilitate and speed up PSC research towards a cure.

The purpose of the registry is to track PSC disease status and symptoms, assist in clinical trial recruitment, facilitate drug safety monitoring for new drugs, and allow patient participation at each level of research. 

The registry is vital in our search for a cure, because PSC is rare and poorly understood. This makes it difficult to gather information about patients and develop treatments for PSC. As more PSCers participate in the registry, researchers can conduct larger clinical trials for PSC disease and symptom treatments, and eventually discover a cure.

How is Your Data Used?

Researchers, approved by the PSC Partners Patient Registry Team, request de-identified registry data for their research, for patient recruitment in clinical trials, and for developing clinical study protocols.

The Patient Voice

The PSC Partners Patient Registry participants represent an important voice of the PSC community by:

  • Engaging in research through patient surveys 
  • Joining clinical trials 
  • Advocating by expressing their unmet needs
  • Tracking effectiveness of new trial drugs 
  • Speeding up new drug approval
  • Participating in real-world monitoring for new drug tolerance and effectiveness

How Does It Work?

Patient Driven: The registry is patient-driven. This means that the patient is at the helm. PSC Partners believes that there can be no one as passionate as patients and their families in wanting new treatments and a cure. Additionally, no one describes symptoms and quality of life better than patients.  

Privacy and Confidentiality: PSC Partners Seeking a Cure established the registry in collaboration with the NIH Office of Rare Disease Research (ORDR). The registry is housed on a platform that abides by National Institutes of Health standards for privacy and confidentiality and is reviewed annually by an Institutional Review Board (IRB). No identifying information ever leaves the registry.

If you are a match for a clinical trial, the registry coordinator contacts you, and you are the one to decide whether you would want to participate in the clinical trial. Again, our registry is patient-driven. Patients can choose if they want to participate in a survey, telephone interview, clinical trial, etc.

Register Today: We need your participation in this patient-generated and patient-driven registry. Your voice is crucial for this small and dispersed PSC community! You can help researchers worldwide by taking less than an hour of your time to complete your, your child’s, or your spouse’s profile. Join the hundreds of men, women, and children who are helping to advance PSC research towards treatments and a cure!

Click the link at the bottom of this page to receive more information and to register.

We hope you will register today! Together in the fight, whatever it takes!

 

Data Access for Researchers

If you are a researcher:

and you would like to have access to our registry data, please complete and return this form.

Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.