Registry Impact
2500+
Registered Participants
328,000+
Survey Question Responses
700+
Healthcare Provider Listings
Your Data in Publication
The following publications resulted from access to your de-identified PSC Partners Registry data.
Advocacy
The Patient Registry enables advocacy on behalf of PSC patients.
Clinical Trial and Study Protocol:
PSC Partners is collaborating with pharmaceutical companies planning and conducting clinical trials by adding your patient perspective to the trial protocol. We also collaborate with researchers on their academic study protocols.
Communication of Trial and Study Opportunities with Patients:
Through the Patient Registry, we are able to share clinical-trial and study information with the PSC community. Those participants who have elected to receive notification from the Registry will be contacted by the Registry if they may be eligible for a trial or study.
Special Projects:
Through the Patient Registry, PSC Partners is able to conduct special projects of importance to the patient community.
History of Collaboration:
The PSC Partners Patient Registry has worked, or is working with, to provide the patient voice and support recruitment support.
- Mirum Pharmaceuticals
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HighTide Therapeutics
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Gilead Sciences
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CymaBay Therapeutics
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NGM Biopharmaceuticals
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Takeda Pharmaceuticals
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Intercept Pharmaceuticals
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Lumena Pharmaceuticals
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Shire Pharmaceuticals
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Durect Pharmaceuticals
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Tobira Therapeutics
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Conatus Pharmaceuticals
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GlaxoSmithKline (GSK)
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Patara Pharma
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Albireo Pharma