New national registry aims to unlock secrets of rare childhood liver diseases
NCT ID NCT07411716
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.
Disclaimer
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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.
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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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Alberta Children's Hospital
NOT_YET_RECRUITINGCalgary, Alberta, Canada
Contact Email: •••••@•••••
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BC Children's Hospital
NOT_YET_RECRUITINGVancouver, British Columbia, Canada
Contact Email: •••••@•••••
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CHU Sainte-Justine
NOT_YET_RECRUITINGMontreal, Quebec, Canada
Contact Email: •••••@•••••
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CHU de Quebec - Universite Laval (Centre Mere-Enfant Soleil)
NOT_YET_RECRUITINGQubec City, Quebec, Canada
Contact Email: •••••@•••••
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Children's Hospital IWK Health Centre
NOT_YET_RECRUITINGHalifax, Nova Scotia, Canada
Contact Email: •••••@•••••
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Children's Hospital LHSC
NOT_YET_RECRUITINGLondon, Ontario, Canada
Contact Email: •••••@•••••
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Children's Hospital of Eastern Ontario
RECRUITINGOttawa, Ontario, Canada
Contact Phone: •••-•••-•••• Email: •••••@•••••
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HSC Winnipeg Children's Hospital
NOT_YET_RECRUITINGWinnipeg, Manitoba, Canada
Contact Email: •••••@•••••
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Janeway Children's Health and Rehabilitation Centre
NOT_YET_RECRUITINGSt. John's, Newfoundland and Labrador, Canada
Contact Email: •••••@•••••
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Jim Pattison Children's Hospital
NOT_YET_RECRUITINGSaskatoon, Saskatchewan, Canada
Contact Email: •••••@•••••
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McMaster Children's Hospital
NOT_YET_RECRUITINGHamilton, Ontario, Canada
Contact Email: •••••@•••••
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Montreal Children's Hospital
NOT_YET_RECRUITINGMontreal, Quebec, Canada
Contact Email: •••••@•••••
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Stollery Children's Hospital
NOT_YET_RECRUITINGEdmonton, Alberta, Canada
Contact Email: •••••@•••••