Research Initiatives
We believe PSC research should be developed in partnership with patients, not solely on their behalf. As an organization founded and led by patients, their lived experiences have consistently informed and directed our research priorities and programs.
WIND-PSC
- Program summary: Patient led prospective study designed to collect regulatory quality real world data to better understand the disease progression and help speed up the path to new treatments.
- Patient partnership: It is the first study of its kind launched and funded solely by the patient community (sponsored by PSC Partners and PSC Partners Canada), demonstrating the power of patient advocacy in driving research.
- Patient opportunity: Recruitment is currently underway at multiple sites across North America, Europe and New Zealand. Adults aged 18 to 75 with a confirmed diagnosis of large-duct PSC may be eligible to participate.
International Collaborative Research Network
(ICRN)
Program Summary
ICRN brings together global PSC experts and patient community members to collaborate on innovative research ideas and develop potential research proposals aligned with community priorities.”
Patient Partnership
PSC Partners first ICRN-funded project was selected with input from over 200 community members.
Patient Opportunity
Patients, relatives, and caregivers can participate in scientific convenings, help develop research proposals, and partner to prioritize and fund projects.
Research Grants
Program
Program Summary
PSC Partners and affiliate PSC Partners Canada fund Standard Seed Grants and Young Investigator Awards annually to conduct innovative research that addresses an important and novel, basic or clinical research question related to PSC and closely associated diseases (such as inflammatory bowel diseases (IBD) and cholangiocarcinoma).
Patient Partnership
Patient advocates support grant applicants as patient partners.
Patient Opportunity
Patients serve as Ad-hoc community reviewers of grant applications alongside the Scientific and Medical Advisory Board (SMAC).
The Symptom Assessment Project (SAP)
- Program Summary: Transforms the lived experiences of people with PSC into scientifically validated tools that measure fatigue, brain fog, and liver pain, allowing clinicians and researchers to reliably track how symptoms change and impact patients over time.
- Patient Partnership: Patients participate as advisors, interviewees, and co-creators; priority symptoms were identified by patients through ROADMAP and multiple focus groups
- Patient Opportunity: Utilize the fatigue, brain fog, and liver pain symptom tracker tools to provide to your physician(s).
PSC Partners Patient Registry
Program summary
Collects PSC patient-reported data to support research on patient experiences and improve clinical care. The Registry also recruits for and facilitates clinical trial participation and provides a platform for patient surveys.
Patient partnership
More than 2,800 patients from 55 countries are currently participating.
Patient opportunity
Patients and caregivers can join the Registry to learn about clinical trials, contribute to surveys, and support research that reflects real-world experiences.
Patient
Experience Surveys
Patient focused surveys are done through PSC Partners with collaboration with global PSC groups. Patient voices on emergent topics are integral for research strategies and partnerships.
Acute Cholangitis Patient Survey
726 responses captured experiences of urgent PSC-related complications; fatigue & anxiety emerged as under-recognized concerns, highlighting the need for further investigation
Cholangiocarcinoma (CCA) Surveillance Patient Survey
623 responses revealed gaps in provider communication and patient education about risk & surveillance of cholangiocarcinoma, a rare bile duct cancer associated with PSC
Patient Opportunity
All community members can join our mailing lists to hear about opportunities for participating in global surveys about emergent community topics.
