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Researchers dig into records to improve care for rare liver disease in kids

NCT ID NCT06184971

Knowledge-focused Sponsor: Yale University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study reviewed medical records of 320 children with biliary atresia, a rare liver disease, treated at hospitals in the northeastern U.S. between 2012 and 2021. The goal was to find which factors lead to better outcomes, such as avoiding liver transplant or clearing jaundice. By analyzing past cases, researchers hope to guide future care and improve survival for these children.

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 research could help doctors understand which treatments work best for children with biliary atresia, potentially leading to better care guidelines.
What could go wrong
This is a retrospective chart review, not a treatment trial. It cannot prove what works best, only suggest patterns. The 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

320 people

The number who actually took part.

Started

May 2024

Finished

Mar 2026

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

Children 12 years and younger (at the time of the qualifying encounter for care) who were diagnosed with biliary atresia, underwent surgical intervention for biliary atresia, and/or had an encounter for care related to biliary atresia at a participating institution during the study period. Patients who did not undergo surgery will be included (e.g. patients who died before surgery).

Ages

Up to 12 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: * Children with a healthcare encounter related to biliary atresia at a participating institution during the study period (January 1st, 2012 through December 31st, 2021) * Age 12 years and younger at the time of the qualifying encounter during the study period (encompassing patients born between January 2nd, 1999 through December 31st, 2021) * Diagnosis of biliary atresia, based on one of the following ICD-10 codes: * Q44.2 Atresia of bile ducts * Q44.3 Congenital stenosis and stricture of bile ducts * Q44.4 Disorders of the biliary tract with major complication or comorbidity * Q44.5 Other congenital malformations of the bile ducts * Q44.6 Disorders of the biliary tract without major complication or comorbidity Exclusion Criteria: * Patients aged 13 years old or older during the study period (i.e. those born before January 2nd, 1999) * Patients born and/or diagnosed with biliary atresia after the end of the study period (i.e. those born after December 31st, 2021) * No diagnosis of biliary atresia * History of biliary atresia without any episodes of care related to biliary atresia during the study period (e.g. a teenager with history of BA who underwent Kasai procedure as an infant and has no current issues related to their BA and is receiving care for an unrelated reason)

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Conditions

The condition(s) this trial relates to.

biliary atresia

As listed by the trial registrant

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

Biliary atresia

Contacts and locations

Locations

  • Albany Medical Center/Bernard & Millie Duke's Children's Hospital

    Albany, New York, 12208, United States

  • Baystate

    Springfield, Massachusetts, 01199, United States

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

  • Connecticut Children's Medical Center

    Hartford, Connecticut, 06106, United States

  • Dartmouth-Hitchcock Medical Center

    Lebanon, New Hampshire, 03756, United States

  • Eastern Maine Medical Center

    Bangor, Maine, 04401, United States

  • John R. Oishei Children's Hospital

    Buffalo, New York, 14203, United States

  • Maine Medical Center

    Portland, Maine, 04102, United States

  • Massachusetts General Hospital for Children

    Boston, Massachusetts, 02114, United States

  • Rhode Island Hospital/Hasbro Children's Hospital

    Providence, Rhode Island, 02905, United States

  • SUNY Upstate Medical University

    Syracuse, New York, 13210, United States

  • UMass Memorial Medical Center

    Worcester, Massachusetts, 01605, United States

  • University of Rochester Medical Center/Golisano Children's Hospital

    Rochester, New York, 14642, United States

  • Yale University

    New Haven, Connecticut, 06510, United States

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Other studies related to the condition(s) this trial covers.