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Research

WIND

WIND-PSC

WIND-PSC is a patient-led, global, prospective, multi-center observational study that is entirely planned, financed, and overseen by PSC Partners. 

WIND-PSC aims to collect regulatory-quality data including extensive clinical data, imaging results, biomarker data, and patient reported outcome measures (PROMs) from up to 2000 patients over five years. 

This database serves as a potential source for an "external placebo arm”, which is a powerful tool for future research and clinical trials. Such a tool currently does not exist.

When evaluating a new treatment in a future clinical trial, researchers can use the WIND-PSC data to identify individuals who closely match the characteristics of those receiving the new treatment. 

By comparing the outcomes of the treated group to their historical "matches" in the WIND-PSC data, researchers can assess the true effectiveness of the new treatment without needing a separate placebo group. 

The extensive WIND-PSC dataset can help researchers identify relevant biomarkers that can be used in clinical trials for accurately measuring the safety and effectiveness of PSC treatments.

The detailed collection of patient symptoms and direct patient experiences through PROM questionnaires in the WIND-PSC study can help researchers connect the data with key disease events, biomarkers, PSC progression, and confirm the quality and effectiveness of the PROM questionnaires. 

The study is enrolling adults between the ages of 18 and 75 who have a confirmed diagnosis of PSC affecting the large bile ducts.

Currently over 300 patients are enrolled across ten sites in Canada, Europe, and the US.

As new study sites are added to WIND-PSC, they will be listed on the ClinicalTrials.gov study record: NCT06297993.  

Posted July 2025

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