Global Prospective, Observational Cohort of Adult Patients With Primary Sclerosing Cholangitis (WIND-PSC Study)

NCT ID: NCT06297993

Last Updated: 2026-01-07

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

2000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-05-06

Study Completion Date

2031-01-31

Brief Summary

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Develop an appropriate real-world data comparator cohort to support the design, execution, and serve as an external control for interventional clinical trials in PSC.

Detailed Description

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Global, multi-center longitudinal observational cohort study. Collection of prospective clinical data to include liver-related clinical outcomes and safety events, hepatobiliary malignancies, relevant key biomarkers, imaging assessments, PSC-related clinical symptoms, patient-reported outcomes, and medication use in adult patients with PSC.

Conditions

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PSC

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Study Groups

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Adult patients with a confirmed diagnosis of large duct PSC.

1. Adult patients between 18 and 75 years of age (inclusive) who can comprehend instructions, follow the study procedures and are willing to sign an Informed Consent Form (ICF).
2. Confirmed clinical diagnosis of large duct PSC

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

1. Adult patients between 18 and 75 years of age (inclusive) who can comprehend instructions, follow the study procedures and are willing to sign an Informed Consent Form (ICF).
2. Confirmed clinical diagnosis of large duct PSC.

Exclusion Criteria

1. Clinically significant acute or chronic liver disease of an etiology other than PSC (including but not limited to metabolic-dysfunction associated steatohepatitis (MASH), PBC, HCV, HBV, or alcoholic hepatitis, Wilson's disease, alpha-1 antitryp-sin deficiency, acute or chronic drug-induced liver injury)

* Patients with PSC and elements of AIH overlap are allowed to enroll
* Patients with metabolic dysfunction associated steatotic liver disease (MASLD) or benign steatosis are allowed to enroll
2. Small-Duct PSC.
3. Clinically diagnosed secondary or IgG4-related sclerosing cholangitis.
4. Clinically diagnosed infections (including acute cholangitis) and receiving treatment within the past 7 days; patients on chronic suppressive antibiotics for acute cholangitis will be allowed to enroll
5. Hospitalization in the past 7 days
6. UDCA dose \>28 mg/kg
7. Evidence of current or historical decompensated cirrhosis based on the following clinical events:

* Ascites \> Grade 2 and requiring treatment
* Esophageal or gastric variceal bleeding requiring hospitalization
* Hepatic encephalopathy (as defined by a West Haven score ≥ 2)
* Spontaneous bacterial peritonitis defined as ascites absolute neutrophil count \>250/mm3 in the absence of an intra-abdominal source of infection
* AKI-HRS according to AASLD Guidelines (Flamm 2021)
* Portal hypertension based on a platelet count \< 150 × 109/L and LSM \> 15 kPa with clinical, laboratory, imaging and/or other relevant parameters
8. Prior liver transplantation
9. MELD 3.0 Score \>15. For subjects on anticoagulation medication, baseline INR determination for MELD score calculation should take this use into account.
10. History, evidence, or high suspicion of hepatobiliary malignancies or active colon cancer based on imaging, screening laboratory values, and/or clinical symptoms. Patients with a history of colon cancer who have undergone a colectomy and have no current evidence of colon cancer will be allowed to enroll in the study.
11. Participants with current clinical or laboratory evidence of any severe, progressive, or uncontrolled disease, related or unrelated to PSC and which, in the opinion of the investigator, has an expected survival of less than 52 weeks.
12. Participants who are impaired, incapacitated, or incapable of completing study-related assessments or giving informed consent.
13. Prisoners or participants who are involuntarily incarcerated.
14. Participants who are currently participating in an investigational PSC therapy clinical study or who have participated in such a study within the past 12 weeks
Minimum Eligible Age

18 Years

Maximum Eligible Age

75 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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PSC Partners Seeking a Cure

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Cynthia Levy, MD

Role: PRINCIPAL_INVESTIGATOR

University of Miami

Stephen Rossi, PharmD

Role: PRINCIPAL_INVESTIGATOR

PSC Partners Seeking a Cure

Locations

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UC Davis

Sacramento, California, United States

Site Status RECRUITING

California Pacific Medical Center

San Francisco, California, United States

Site Status RECRUITING

University of California, San Francisco

San Francisco, California, United States

Site Status RECRUITING

Yale University

New Haven, Connecticut, United States

Site Status RECRUITING

Schiff Center for Liver Diseases / University of Miami

Miami, Florida, United States

Site Status RECRUITING

Indiana University

Indianapolis, Indiana, United States

Site Status RECRUITING

Massachusetts General Hospital

Boston, Massachusetts, United States

Site Status RECRUITING

Beth Israel Deaconess Medical Center

Boston, Massachusetts, United States

Site Status RECRUITING

Mayo Clinic

Rochester, Minnesota, United States

Site Status RECRUITING

Virginia Commonwealth University

Richmond, Virginia, United States

Site Status RECRUITING

University of Alberta

Edmonton, Alberta, Canada

Site Status RECRUITING

University Health Network

Toronto, Ontario, Canada

Site Status RECRUITING

University Medical Center Hamburg-Eppendorf

Hamburg, Hamburg, Germany

Site Status RECRUITING

University of Milano Bicocca

Milan, Monza (MB), Italy

Site Status RECRUITING

Auckland University

Auckland, , New Zealand

Site Status RECRUITING

Countries

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United States Canada Germany Italy New Zealand

Central Contacts

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Stephen Rossi, PharmD

Role: CONTACT

3037715227

Priya Kannusamy

Role: CONTACT

3037715227

Facility Contacts

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Richard Dean

Role: primary

Stefanie Roberts, BS

Role: primary

415-600-1107

Fawzy Barry

Role: primary

Suzie Christopher

Role: primary

Cynthia Levy, MD

Role: primary

306.243.4615

Rebecca Gerstorff

Role: primary

Shruti Patel

Role: primary

(516) 508-2213

Julie Shea

Role: primary

617-632-1129

Paige Powrie

Role: primary

Caitlin Hurst, BS

Role: primary

(804) 828-9405

Rebecca Miller

Role: primary

Madeline Cameron, HBsc, CRC

Role: primary

647-984-8146

Jan-Philipp Weltzsch, MD

Role: primary

4915222816718

Eugenia Nofit

Role: primary

Yuliya Evdokimova

Role: primary

Other Identifiers

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WIND-PSC-01

Identifier Type: -

Identifier Source: org_study_id

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