Condition: PFIC - Progressive Familial Intrahepatic Cholestasis · Alagille Syndrome (ALGS) · Cholestasis, Intrahepatic · Sponsor: Children's Hospital of Eastern Ontario
The purpose of this study is to create a national, multi-centre registry for children with Alagille syndrome (ALGS) and Genetic Intrahepatic Cholestasis (GIC) that follows participants long-term, ensuring standardized, high-quality data capture across all participating pediatric hepatology centres. Inclusion criteria: • Pediatric participants (\<18 years old) with genetically confirmed or clinically diagnosed ALGS or any of the various subtypes of GIC, each associated with a distinct genetic mutation: A. PFIC Type 1 (FIC1 Deficiency) - Mutation in ATP8B1 gene. B. PFIC Type 2 (BSEP Deficiency) - Mutation in ABCB11 gene. C. PFIC Type 3 (MDR3 Deficiency) - Mutation in ABCB4 gene. D. PFIC Type 4 (TJP2 Deficiency) - Mutation in TJP2 gene. E. PFIC Type 5 (FXR Deficiency) - Mutation in NR1H4 gene. F. PFIC Type 6 (MYO5B-Associated) - Mutation in MYO5B gene. G. Progressive cholestasis of northwestern Quebec (PCNQ)-Mutation in UTP4 gene. * Enrollment within Canadian pediatric liver centers participating in the registry. * Written informed consent obtained from participant if they have the capacity, or parents/guardians, and assent from participants as appropriate. Exclusion criteria: • Inability to comply with follow-up requirements (lost to follow-up). Participants will be recruited from our hepatology clinics retrospectively (diagnosed on or after January 1, 2022) and prospectively (newly diagnosed). Written consent/assent will be obtained from all participants prior to data col…
This description comes directly from the study's public registry record.
Mohit Kehar · 613-737-7600 x 1516 · MKehar@cheo.on.ca
Always discuss trial participation with your own doctor first.
| Alberta Children's Hospital | Calgary, Alberta, Canada | Not Yet Recruiting |
| Stollery Children's Hospital | Edmonton, Alberta, Canada | Not Yet Recruiting |
| BC Children's Hospital | Vancouver, British Columbia, Canada | Not Yet Recruiting |
| HSC Winnipeg Children's Hospital | Winnipeg, Manitoba, Canada | Not Yet Recruiting |
| Janeway Children's Health and Rehabilitation Centre | St. John's, Newfoundland and Labrador, Canada | Not Yet Recruiting |
| Children's Hospital IWK Health Centre | Halifax, Nova Scotia, Canada | Not Yet Recruiting |
| McMaster Children's Hospital | Hamilton, Ontario, Canada | Not Yet Recruiting |
| Children's Hospital LHSC | London, Ontario, Canada | Not Yet Recruiting |
| Children's Hospital of Eastern Ontario | Ottawa, Ontario, Canada | Recruiting |
| CHU Sainte-Justine | Montreal, Quebec, Canada | Not Yet Recruiting |
| Montreal Children's Hospital | Montreal, Quebec, Canada | Not Yet Recruiting |
| CHU de Quebec - Universite Laval (Centre Mere-Enfant Soleil) | Qubec City, Quebec, Canada | Not Yet Recruiting |
+ 1 more locations — full list on the registry record.
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Source record: clinicaltrials.gov/study/NCT07411716