๐Ÿ›๏ธ Verified NIH Record โ€ข Updated 2026-07-13

Primary Sclerosing Cholangitis in Children (NCT04181138)

Prospective Observational Study of Primary Sclerosing Cholangitis (PSC) in Children

๐ŸŸข Recruiting Interventional Protocol ๐Ÿ“Š Observational Clinical Research Sponsor: Arbor Research Collaborative for Health

๐Ÿฉบ Plain-English Summary (8th-Grade Level)

Primary sclerosing cholangitis (PSC) is a rare liver disease that damages the liver's bile ducts. Bile ducts are tiny tubes that carry bile from the liver to the small intestine. Bile is a liquid produced by the liver that helps us absorb and use the nutrients in the food we eat. In people with PSC, the bile backs up into the liver and will damage it, causing scarring of the liver. The purposes of this study are to: * Collect medical and other data to learn more about PSC, how it progresses, and identify factors that may cause the disease to progress more quickly. * Ask questions about how PSC symptoms affect your child's life to learn more about its impact on your child's daily functioning * Children with PSC who are seen at one of the participating clinical sites in the Childhood Liver Disease Research Network (ChiLDReN) will be asked to contribute information, DNA, and other specimens. The information and specimens will be available to investigators to carry out approved research aimed at learning more about the possible causes and long-term effects of PSC.

Who can join: Review the eligibility criteria below.

Location: Children's Hospital of Los Angeles โ€” Los Angeles, California

Age range: 2 Years to 25 Years

๐Ÿ“‹ "Do I Qualify?" โ€” 1-Minute Self Screener

Instant Checklist

Full eligibility criteria are available on the official NIH protocol. View the criteria โ†—

๐Ÿ“ All Participating Trial Locations (12 Sites)

  • Children's Hospital of Los Angeles โ€” Los Angeles, California
  • Children's Hospital Colorado โ€” Aurora, Colorado
  • Children's Healthcare of Atlanta โ€” Atlanta, Georgia
  • Ann & Robert H Lurie Children's Hospital โ€” Chicago, Illinois
  • Riley Hospital for Children โ€” Indianapolis, Indiana
  • Cincinnati Children's Hospital Medical โ€” Cincinnati, Ohio
  • The Children's Hospital of Philadelphia โ€” Philadelphia, Pennsylvania
  • UPMC Children's Hospital of Pittsburgh โ€” Pittsburgh, Pennsylvania
  • Texas Children's Hospital (Baylor College of Medicine) โ€” Houston, Texas
  • The University of Utah โ€” Salt Lake City, Utah
  • Seattle Children's Hospital โ€” Seattle, Washington
  • The Hospital for Sick Children โ€” Toronto, Ontario

๐Ÿ“ž Contact the Study Coordinator

Phone: (734) 693-3811

Email: melissa.sexton@arborresearch.org

Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.

๐Ÿ’ฐ Cost, Insurance & Patient Rights

  • 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
  • Routine Patient Care: Under federal law (ACA ยง 2709) and many state statutes, routine care costs are covered during participation.
  • Voluntary Participation: You may withdraw at any time without affecting your standard medical care.

๐Ÿ’ก How to Participate

  1. Check the checklist above to see if you may qualify.
  2. Contact the study coordinator using the phone/email above.
  3. Ask about the visit schedule, what is covered at no cost, and any travel support.
  4. Confirm with your own doctor before making a decision.
๐Ÿ›๏ธ View Official NIH Record โ†—