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

NCT ID NCT00345553

Knowledge-focused Sponsor: Arbor Research Collaborative for Health Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,265 people

The number the study aims to enrol. It can still change while the study runs.

Started

May 2006

Expected to finish

May 2029

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Recruitment will be open to any eligible subject. The method of contacting the study subjects will conform to local IRB guidelines, but in general: the parents or guardians of all eligible subjects at each ChiLDReN center, or the subjects themselves if 18 years of age or older, will be approached to participate. New patients who are not participating in ChiLDReN study PROBE may be approached for study participation, but will not be eligible for enrollment until 6 months of age.

Ages

6 months to 20 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. Participants need to have a confirmed diagnosis of BA determined by chart review including review of pertinent diagnostic biopsy reports, radiologic reports and surgical reports (if surgery was performed). 2. Participants need to be \>6 months of age up to and equal to the age of 20 (participants enrolled at 20 years of age will have one visit). 3. Participants with their native liver. 4. Parent, guardian or participant (if 18 years of age or older) is willing to provide informed consent and, when appropriate, the participant is willing to assent. Exclusion Criteria: 1. Currently participating in the ChiLDReN study PROBE. 2. Inability to confirm original diagnostic evaluation of biliary atresia. 3. Inability or unwillingness of family or participant to participate in all scheduled visits. 4. History of liver transplantation.

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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.

Biliary atresia

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    9 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

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

    RECRUITING

    Chicago, Illinois, 60614, United States

  • Children's Healthcare of Atlanta - Emory University

    RECRUITING

    Atlanta, Georgia, 30322, United States

  • Children's Hospital Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

  • Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, 45229, United States

  • Children's Hospital of Los Angeles

    RECRUITING

    Los Angeles, California, 90027, United States

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • 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

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

    RECRUITING

    Houston, Texas, 77030, United States

  • 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

  • Washington University School of Medicine

    COMPLETED

    St Louis, Missouri, 63110, United States

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