New registry tracks kids with rare liver conditions to improve care

NCT ID NCT07411716

First seen Feb 23, 2026 · Last updated May 15, 2026 · Updated 13 times

Summary

This study builds a national registry for children under 18 with Alagille syndrome or genetic intrahepatic cholestasis. Researchers will collect health data over many years to understand how these rare liver diseases progress and how treatments work in real life. The goal is to improve care and outcomes for affected children across Canada.

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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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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Alberta Children's Hospital

    NOT_YET_RECRUITING

    Calgary, Alberta, Canada

    Contact Email: •••••@•••••

  • BC Children's Hospital

    NOT_YET_RECRUITING

    Vancouver, British Columbia, Canada

    Contact Email: •••••@•••••

  • CHU Sainte-Justine

    NOT_YET_RECRUITING

    Montreal, Quebec, Canada

    Contact Email: •••••@•••••

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

    NOT_YET_RECRUITING

    Qubec City, Quebec, Canada

    Contact Email: •••••@•••••

  • Children's Hospital IWK Health Centre

    NOT_YET_RECRUITING

    Halifax, Nova Scotia, Canada

    Contact Email: •••••@•••••

  • Children's Hospital LHSC

    NOT_YET_RECRUITING

    London, Ontario, Canada

    Contact Email: •••••@•••••

  • Children's Hospital of Eastern Ontario

    RECRUITING

    Ottawa, Ontario, Canada

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • HSC Winnipeg Children's Hospital

    NOT_YET_RECRUITING

    Winnipeg, Manitoba, Canada

    Contact Email: •••••@•••••

  • Janeway Children's Health and Rehabilitation Centre

    NOT_YET_RECRUITING

    St. John's, Newfoundland and Labrador, Canada

    Contact Email: •••••@•••••

  • Jim Pattison Children's Hospital

    NOT_YET_RECRUITING

    Saskatoon, Saskatchewan, Canada

    Contact Email: •••••@•••••

  • McMaster Children's Hospital

    NOT_YET_RECRUITING

    Hamilton, Ontario, Canada

    Contact Email: •••••@•••••

  • Montreal Children's Hospital

    NOT_YET_RECRUITING

    Montreal, Quebec, Canada

    Contact Email: •••••@•••••

  • Stollery Children's Hospital

    NOT_YET_RECRUITING

    Edmonton, Alberta, Canada

    Contact Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.