Massive study aims to unlock genetic secrets of rare liver disease in kids

NCT ID NCT00345553

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is collecting medical information, genetic material, and body fluid samples from over 1,200 children with biliary atresia, a rare liver disease. The goal is to find genes that cause the disease and understand how it progresses in children who still have their own liver. No new treatments are being tested; instead, researchers hope to learn more about the disease to guide future care.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this could help identify genes linked to biliary atresia and better predict how the disease progresses in children who haven't had a liver transplant.

What could go wrong

This is an observational study, not a treatment trial, so it won't directly improve health. It may take years to yield useful insights, and genetic findings may not apply to all patients.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

biliary atresia cholestasis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Study contacts

  • Contact

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  • Contact

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Locations

  • Ann & Robert H. Lurie Children's Hospital of Chicago

    RECRUITING

    Chicago, Illinois, 60614, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Children's Healthcare of Atlanta - Emory University

    RECRUITING

    Atlanta, Georgia, 30322, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact

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  • Children's Hospital Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

    Contact

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

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    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact

  • Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, 45229, United States

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Children's Hospital of Los Angeles

    RECRUITING

    Los Angeles, California, 90027, United States

    Contact

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Hospital for Sick Children

    COMPLETED

    Toronto, Ontario, M5G 1X8, Canada

  • Johns Hopkins School of Medicine

    COMPLETED

    Baltimore, Maryland, 21287, United States

  • Mount Sinai Medical Center

    COMPLETED

    New York, New York, 10029, United States

  • Riley Children's Hospital

    COMPLETED

    Indianapolis, Indiana, 46202, United States

  • Seattle Children's Hospital

    RECRUITING

    Seattle, Washington, 98105, United States

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

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    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Texas Children's Hospital (Baylor College of Medicine)

    RECRUITING

    Houston, Texas, 77030, United States

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • UPMC Children's Hospital of Pittsburgh

    COMPLETED

    Pittsburgh, Pennsylvania, 15224, United States

  • University of California at San Francisco

    COMPLETED

    San Francisco, California, 94143, United States

  • University of Utah

    RECRUITING

    Salt Lake City, Utah, 84113, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

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  • Washington University School of Medicine

    COMPLETED

    St Louis, Missouri, 63110, United States