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Can a shared data network transform care for kids with liver disease?

NCT ID NCT05750498

Knowledge-focused Sponsor: Children's Hospital Medical Center, Cincinnati 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Aug 19, 2026 · Last updated Aug 20, 2026 · Updated 1 time

Summary

This study creates a shared registry and learning network for children and young adults with autoimmune liver disease, including autoimmune hepatitis and primary sclerosing cholangitis. By collecting clinical data across multiple centers, the goal is to reduce treatment variation and improve outcomes and quality of life. The study will track disease characteristics, remission rates, complications, and side effects of treatments. It aims to shift toward a patient- and family-centered approach to 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 registry could help standardize care for children with autoimmune liver disease, potentially improving outcomes and quality of life.
What could go wrong
This is an observational registry, not a treatment trial, so it won't directly test new therapies. Its impact depends on how well centers adopt and implement shared practices.

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 800 people

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

Started

Apr 2022

Expected to finish

Jun 2033

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

All patients with a clinical diagnosis of Autoimmune Hepatitis (AIH), Primary Sclerosing Cholangitis (PSC), and Autoimmune Sclerosing Cholangitis (ASC). Patient recruitment will be conducted by the care centers participating in the registry. This also includes the recruitment of Spanish and other language-speaking patients. Participants who are enrolled in ImproveCareNow and who are eligible for A-LiNK will be separately consented to this study.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Clinical diagnosis of autoimmune hepatitis (AIH) * Clinical diagnosis of primary sclerosing cholangitis (PSC) * Clinical diagnosis of autoimmune sclerosing cholangitis (ASC) Exclusion Criteria: • History of liver transplant

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Conditions

The condition(s) this trial relates to.

autoimmune hepatitis Cholangitis, Sclerosing End Stage Liver Disease primary sclerosing cholangitis

As listed by the trial registrant

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

Autoimmune hepatitis Primary sclerosing cholangitis

How to take part

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

  1. The places running it

    8 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

  • Cincinnati Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, 45229, United States

  • Nationwide Children's Hospital

    RECRUITING

    Columbus, Ohio, 43205, United States

  • Riley Children's Health

    RECRUITING

    Indianapolis, Indiana, 46202, United States

  • Seattle Children's Hospital

    RECRUITING

    Seattle, Washington, 98105, United States

  • St. Louis Children's Hospital

    RECRUITING

    St Louis, Missouri, 63110, United States

  • Stanford University

    RECRUITING

    Palo Alto, California, 94304, United States

  • UPMC Children's Hospital of Pittsburgh

    RECRUITING

    Pittsburgh, Pennsylvania, 15224, United States

  • UT Southwestern Medical Center

    RECRUITING

    Dallas, Texas, 75390, United States

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