WIND-PSC
Study
A global multi-center prospective cohort study sponsored by PSC Partners and PSC Partners Canada designed to collect regulatory quality real word data to better understand the progression of PSC.
Why did We Develop WIND-PSC?
In 2022, PSC Partners unveiled the WIND-PSC initiative, inspired by the PSC community’s call to identify new treatment options for PSC and address the unmet medical needs of PSC patients.
With no current FDA-approved therapies for PSC, WIND-PSC was developed to generate key data to advance research, remove barriers and potentially accelerate the development of effective treatments for PSC.
This prospective observational cohort can overcome recruitment and ethical challenges that previous external controlled trials have faced in the FDA drug approval pathway.
The real-world data collected for WIND-PSC could serve as an external control arm to complement clinical trial design, address these issues, and help us answer important questions regarding disease progression.
“With support from various stakeholders in the WIND-PSC initiative, PSC Partners seeks to speed up drug development for PSC, addressing a crucial need identified by patients.”
– Ricky Safer, PSC Partners Founder and CEO
What is the
WIND-PSC Study?
WIND-PSC is an innovative, patient-led study research initiative that collects regulatory quality data from up to 2000 adult patients over five years. Designed to layer on top of standard of care, patients complete a baseline and subsequent annual in-person study visits which include their regular PSC care, FibroScan, blood work, and an online symptom survey. Additionally, patients are contacted remotely every quarter to review their medical history and complete an online symptom survey.
STUDY QUESTIONS
- How does PSC progress over time?
- Can we find tests that predict PSC progression or treatment response?
- How do PSC symptoms and daily life change over time?
STUDY OUTCOMES
- Improve our understanding of the disease and patient experience
- Establish a global dataset to serve as invaluable resource to research community
- Support faster PSC drug development
Clinical Data
Imaging Results
Biomarker Data
Patient Reported Outcome Measures
WIND Study Sites
| Site | Principal Investigator |
|---|---|
| Auckland Hospitals Research Center | Hannah Giles, MBChB, FRACP |
| Beth-Israel Deaconess | Vilas Patwardhan, MD |
| California Pacific Medical Center | Kidist Yimam, MD |
| Hamburg, Germany | Christoph Schramm, Prof. Dr |
| Indiana University | Craig Lammert, MD |
| Oxford | Culver |
| Mass. General Hospital/Harvard | Daniel Pratt, MD |
| Mayo Clinic Rochester | John Eaton, MD |
| Montreal | Julian Hercun, MD |
| UC Davis | Christopher Bowlus, MD |
| University Health Network | Gideon Hirschfield, FRCP, MD |
| University of Alberta | Aldo Montano-Loza, MD, MSc, PhD, FAASLD, FACG |
| University of Miami | Cynthia Levy, MD |
| University of Milan | Laura Cristoferi, MD, PhD |
| UC San Francisco | Michael Li, MD, MPH |
| UT Southwestern | Marlyn Mayo, MD |
| Virginia Commonwealthy University | Obi Aseem, MD |
| Yale | Marina Silveira, MD |
Current Study Metrics
Approved Study Sites Globally
Patients Enrolled as of April 13, 2026
WIND-PSC Started Enrollment
Key WIND-PSC Takeaways from First 429 Patients Enrolled
The WIND PSC cohort exhibits characteristics similar to those of the general PSC community. With fatigue the most commonly reported symptom at baseline.
| Age (years) at first PSC diagnosis | ||
|---|---|---|
| 18 to 25 | 72(16.86%) | |
| 26 to 40 | 145(33.96%) | |
| 41 to 55 | 85(19.91%) | |
| 56 to 75 | 50(11.71%) | |
| Under 18 | 74(17.33%) | |
| IDB Status | Crohn’s Disease | 74(17.33%) |
| UICeretive Colitis | 243(56.91%) | |
| Indeterminate Colitis | 20(4.68%) | |
| None | 74(17.33%) | |
| Liver Stiffness | <7.4 kPa | 212(49.53%) |
| >14.4 kPa | 47(10.98%) | |
| >7.4 to <14.4 kPa | 115(26.87%) |
What Do I Need To Know About WIND-PSC As A Patient Or Caregiver?
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.
Note: Due to the study’s protocol, participants must reside near and receive care at one of the participating study sites. As the study sponsor, PSC Partners is not involved in direct enrollment. If you are local to an enrolling site and interested in participating, we encourage you to reach out to the site directly to learn more about the enrollment process
