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, that helps researchers better understand PSC and develop new treatments and a cure.
Our Impact in Numbers
13 Years
Patient-driven research
2,800+ Participants
Contributing their stories
55 Countries
Represented across the global PSC community
25 Publications
Research made possible by Registry participants
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 privacy standards.
Only data that has had 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
