Patient Registry
The PSC Partners Patient Registry is a secure online program that amplifies your voice in PSC research. By participating, you share health information, including changes over time, to help improve understanding of PSC and develop new treatments and a cure. Researchers only receive access to de-identified data, ensuring your personal information remains private.
Our Impact in Numbers
Years of Patient-Driven Research
Participants Adding Their Voices
Countries Represented Globally
Every Voice Matters
PSC is a rare disease that varies widely from person to person, which makes it challenging to gather enough information to fully understand it.
Some aspects of PSC, like cases in children or related cancers, are even harder to study because they are less common. These may require thousands of patients to conduct effective research.
Everyone has a unique PSC story. Your participation in the Patient Registry can help lead to new discoveries.
Confidential and Secure
Names, contact details, and other identifying information are never shared from the Registry.
All data is stored in a secure, encrypted server that meets U.S. HIPAA and FISMA (Federal Information Security Modernization Act) privacy standards.
Only de-identified data (data that has all identifying information removed) is shared with researchers.
You can withdraw at any time and request that your data be deleted.
Track Your PSC Journey
The Registry gives you simple tools to share your experience and engage in research.
- Research made possible by the Registry improves care and helps develop new treatments for PSC.
- Manage your care with optional medication reminders, symptom trackers, and journals.
- Stay informed about new clinical trials and studies.
“I participate in the Registry because I want my unique PSC experience to be accurately reflected in the research”
– L.N., Post-transplant Patient
