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New national registry aims to unlock secrets of rare childhood liver diseases

NCT ID NCT07411716

Recruiting now Knowledge-focused Sponsor: Children's Hospital of Eastern Ontario Source: ClinicalTrials.gov ↗

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

Summary

This study creates a Canadian registry for children under 18 with Alagille syndrome or genetic intrahepatic cholestasis, rare liver conditions that cause bile buildup. Researchers will collect health data from medical records over time to understand how these diseases progress and how current treatments work in real life. The goal is to improve care and outcomes for affected children across Canada.

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 will provide crucial data on how these rare liver diseases progress over time, helping doctors improve treatment and care for affected children.
What could go wrong
This is an observational registry, not a treatment trial, so it won't directly test a new therapy. Results depend on consistent data collection and may take years to yield meaningful insights.

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

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Conditions

The condition(s) this trial relates to.

Alagille syndrome cholestasis Cholestasis, progressive familial intrahepatic 1 cholestasis, progressive familial intrahepatic, 4 cholestasis, progressive familial intrahepatic, 5 cholestasis, progressive familial intrahepatic, 6 familial intrahepatic cholestasis hereditary North American Indian childhood cirrhosis intrahepatic cholestasis progressive familial intrahepatic cholestasis progressive familial intrahepatic cholestasis type 1 progressive familial intrahepatic cholestasis type 2 progressive familial intrahepatic cholestasis type 3

As listed by the trial registrant

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

ALAGILLE SYNDROME (ALGS) CHOLESTASIS, INTRAHEPATIC PFIC - PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS

Contacts and locations

Locations

  • Alberta Children's Hospital

    NOT_YET_RECRUITING

    Calgary, Alberta, Canada

  • BC Children's Hospital

    NOT_YET_RECRUITING

    Vancouver, British Columbia, Canada

  • CHU Sainte-Justine

    NOT_YET_RECRUITING

    Montreal, Quebec, Canada

  • CHU de Quebec - Universite Laval (Centre Mere-Enfant Soleil)

    NOT_YET_RECRUITING

    Qubec City, Quebec, Canada

  • Children's Hospital IWK Health Centre

    NOT_YET_RECRUITING

    Halifax, Nova Scotia, Canada

  • Children's Hospital LHSC

    NOT_YET_RECRUITING

    London, Ontario, Canada

  • Children's Hospital of Eastern Ontario

    RECRUITING

    Ottawa, Ontario, Canada

  • HSC Winnipeg Children's Hospital

    NOT_YET_RECRUITING

    Winnipeg, Manitoba, Canada

  • Janeway Children's Health and Rehabilitation Centre

    NOT_YET_RECRUITING

    St. John's, Newfoundland and Labrador, Canada

  • Jim Pattison Children's Hospital

    NOT_YET_RECRUITING

    Saskatoon, Saskatchewan, Canada

  • McMaster Children's Hospital

    NOT_YET_RECRUITING

    Hamilton, Ontario, Canada

  • Montreal Children's Hospital

    NOT_YET_RECRUITING

    Montreal, Quebec, Canada

  • Stollery Children's Hospital

    NOT_YET_RECRUITING

    Edmonton, Alberta, Canada

More trials for these conditions

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