Primary Sclerosing Cholangitis Observational Study

Prospective Observational Study of Primary Sclerosing Cholangitis in Children, a Protocol of the Childhood Liver Disease Research Network

Protocol Description

This observational study has been initiated to learn more about primary sclerosing cholangitis (PSC), its possible causes, how it progresses, and long-term effects. Through this protocol, medical researchers from the Childhood Liver Disease Research Network, including those from UPMC Children’s Hospital of Pittsburgh, will collect medical data and information from 1,000 participants to be de-identified and stored. This information will help researchers to better understand the causes and effects of this rare disease over time.

Eligibility Criteria

Subject to certain exclusion criteria, this study is open to young people who are diagnosed with PSC.
Males and Females: Ages 2 through 25


Participants will be seen by the study team for physical examinations and biologic sample collection (blood, saliva, etc.) 4 times in the first year and then annually for years 2 through 10. Medical record information related to participants’ condition, as well as imaging studies, and biologic sampling information will be collected by the study team. Quality-of-life questionnaires will be administered, and ultrasound and MRI imaging will be done as part of the study.
Visits: 13
Duration: 10 years or until the participant reaches age 27 or receives a liver transplant

Status: Open to Enrollment

Source(s) of Support

Childhood Liver Disease Research Network
National Institute of Diabetes and Digestive and Kidney Diseases
National Institutes of Health
Arbor Research Collaborative for Health and University of Michigan

Primary Investigator

Simon Horslen, MD

Contact Information

For more information about the study or enrollment, please contact:
Christina Henry, Clinical Research Coordinator
412-692-3905 or
Susan Richey, RN, Clinical Research Nurse Coordinator