A fundamental part of PSC Partners Canada’s mission is to drive research to identify treatments and ultimately a cure for PSC. To accomplish this goal, PSC Partners Canada raises funds and allocates them to PSC research. Since 2009, the Canadian organization has awarded over $900,000 in research grants. With the help of Canadian donors, research focused on primary sclerosing cholangitis (PSC) is taking place worldwide.
PSC Research in Canada and Beyond – Funding a Future
PSC is a rare liver disease that damages the bile ducts inside and outside the liver. The cause of PSC is not currently known, but it is thought to be a combination of genetics and environment. Research is needed to identify the causes of the disease and develop effective treatments.
PSC Partners Canada supports researchers on several fronts – collecting deidentified PSC patient information, supporting and participating in patient-partnered research projects, funding research, and sharing information about clinical trials.


Join the PSC Partners Patient Registry
The PSC Partners Patient Registry is a secure, confidential platform that gathers essential information about individuals living with PSC. Participants, either those with PSC or their designated caregivers, contribute data primarily through online surveys.
The collected data plays a critical role in advancing PSC research and advocating for the unmet needs of the PSC community. Approved researchers can request access to de-identified patient data for analysis and use in scientific publications.
This international registry, created in 2014, holds information on over 2,500 patients (as of Jan 2025). The data collected contains survey responses on diagnosis, family history, quality of life, medications, surgeries, overlapping diseases, and patient demographics.
Find out more about the Patient Registry
If you are a PSC researcher interested in the Registry, please review the PSC Partners Data Access Policy or contact the Registry team at [email protected]
Supporting PSC researchers through grants
In 2009, PSC Partners Seeking a Cure awarded its first set of research grants. This was an important step for patient-driven research towards new treatments and an eventual cure.
PSC Partners Canada initiated the Canadian grants program in 2016. Since then, over C$2,400,000 has been allocated to PSC research from Canadian-source donations. A record of the annual grants can be found here.
Every year, grants are awarded to fund research that addresses an important and novel, basic or clinical question related to PSC, based upon a competitive research proposal review process. Funding for PSC Partners Canada research grants comes from the generous donations of our Canadian donors.
If you are a researcher interested in applying for funding for PSC research, learn about the annual research grant application here.

Clinical trials
Clinical trials give patients a chance to take part in research. In a clinical trial, participants receive treatments or follow plans designed by researchers. These treatments can include medicines, medical devices, procedures, or lifestyle changes like diet.
PSC Partners collaborates with investigators conducting clinical trials, be they pharmaceutical, biotech, or independent investigator sponsored. We can add our patient perspective to the trial protocol and support trial enrollment through education. We also share clinical trial information with the PSC community.
Find out more about PSC-related clinical trials and those are currently recruiting in Canada, by visiting our Clinical Trials in Canada resource page.

Help support PSC research
The more we learn about PSC, the closer we get to finding treatments and a cure.
- Join the PSC Partners Registry
- Donate to fund PSC research
- Participate in a clinical trial

Key facts about PSC
- C$2,400,000 in Research grants allocated in Canada from 2016 to 2024
- 2,500+ people in the PSC Partners Registry
- As of January 2025, three clinical trials/studies are currently recruiting in Canada