Scientists track rare liver diseases in kids to unlock clues

NCT ID NCT01148550

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows up to 90 children and young adults with mitochondrial liver diseases to learn how these conditions progress over time. Researchers will collect medical data and samples to better understand the diseases and find markers that predict outcomes. The goal is to improve care and guide future treatments.

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 study could improve understanding of mitochondrial liver diseases and help identify biomarkers to predict disease progression.

What could go wrong

This is an observational study, not a treatment trial, so it offers no direct benefit to participants. It is currently suspended, which may delay results.

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.

acute liver failure cholestasis chronic liver failure disorder of fatty acid oxidation and ketogenesis End Stage Liver Disease fatty liver disease Fibrosis inborn mitochondrial metabolism disorder inherited fatty acid metabolism disorder liver disorder mitochondrial disease mitochondrial oxidative phosphorylation disorder mitochondrial respiratory chain complex deficiency

As listed by the trial registrant

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

Contacts and locations

Locations

  • Ann & Robert H. Lurie Children's Hospital

    Chicago, Illinois, 60611, United States

  • Children's Healthcare of Atlanta - Emory University

    Atlanta, Georgia, 30322, United States

  • Children's Hospital Colorado

    Aurora, Colorado, 80045, United States

  • Children's Hospital Los Angeles

    Los Angeles, California, 90027, United States

  • Children's Hospital Medical Center

    Cincinnati, Ohio, 45229, United States

  • Hospital for Sick Children

    Toronto, Ontario, M5G 1X8, Canada

  • Johns Hopkins School of Medicine

    Baltimore, Maryland, 21287, United States

  • Mount Sinai Medical Center

    New York, New York, 10029, United States

  • Riley Hospital for Children

    Indianapolis, Indiana, 46202, United States

  • Seattle Children's Hospital

    Seattle, Washington, 98105, United States

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

    Houston, Texas, 77030, United States

  • The Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

  • UPMC Children's Hospital of Pittsburgh

    Pittsburgh, Pennsylvania, 15224, United States

  • University of California at San Francisco (UCSF)

    San Francisco, California, 94143, United States

  • University of Utah

    Salt Lake City, Utah, 84113, United States

  • Washington University School of Medicine

    St Louis, Missouri, 63110, United States