Road to a Cure

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Patient Registry

Patient Registry

Join the PSC Partners Patient Registry today! Here’s your chance to help speed up PSC research. Read more about the registry below, then sign up as a patient or patient guardian:

JOIN THE
REGISTRY

What is the Registry?

The PSC Partners Patient Registry is a place to store information about those affected by PSC. The data collected includes information on diagnosis, family history, quality of life, medications, surgeries, overlapping diseases, and patient demographics. It will evolve as the registry grows. It takes half an hour at the most to complete the patient survey.

Why was it created?

The registry was created because PSC is rare and poorly understood, which makes it difficult to locate PSC patients, gather information and develop treatments. In addition, the rarity of the disease makes it difficult to conduct large clinical trials. The purpose of the registry is to track disease progression, to assist clinical trial recruitment, to facilitate drug safety monitoring for new drugs, and to allow patient participation at each level of research.

How does it work?

The registry is patient-driven. This means that the patient is the one 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, and that there can be no one who can describe symptoms and quality of life better than a patient can. A study on the accuracy and effectiveness of the patient data was presented at the annual 2015 AASLD meeting in San Francisco. PSC Partners is working with pharmaceutical companies that are testing treatments for PSC.

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 leaves the registry. If you are a match for a clinical trial, PSC Partners contacts you, and you are the one to decide whether you would want to participate in the clinical trial.

As registry participants, patients may elect to receive information about opportunities to participate in research, clinical trials, medical advances and other news from the PSC Partners patient registry.
We hope you will register today! Together in the fight, whatever it takes!

Data Access for Researchers

If you are a researcher who would like access to the registry data, please complete and return this form:

Researcher Data Access Form