NCT06041906

International Registry of Congenital Portosystemic Shunt (IRCPSS)

International Registry of Congenital Portosystemic Shunts (IRCPSS) - A Multi-centre, Retrospective and Prospective Registry of Neonates, Children and Adults With Congenital Portosystemic Shunts

• Status: Enrolling By Invitation
• Phase: —
• Study type: Observational
• Enrollment: 500 (estimated)
• Sponsor: Prof. Valérie Mc Lin · Academic / Other
• Sex: All
• Age: 1 Day
• Healthy volunteers: Not accepted

Summary

Congenital Portosystemic Shunt (CPSS) is a rare condition important by the multiplicity and severity of associated complications. CPSS is venous anomaly in which blood coming from the intestines only partially passes through the liver. This leads to the accumulation of potentially toxic factors that cause systemic effects. Complications vary among the individuals, and currently, it is challenging to predict which individuals will develop severe complications. The IRCPSS registry is established with the aim of centralizing detailed clinical follow-up and biological information from participants around the world who suffer from Congenital Portosystemic Shunt (CPSS). A multidisciplinary consortium of experts is collaborating to enhance our understanding of the prevalence, natural history, individual risks, and physiopathology of the disease through the IRCPSS registry.

Conditions

• Congenital Portosystemic Shunt
• CPSS (Congenital Portosystemic Shunt)

Interventions

Type	Name	Description
PROCEDURE	Shunt Closure	Consist in spontaneous, surgical or interventional closure of the shunt. Depending on context, surgical intervention may also be transplantation.

Timeline

• Start date: 2018-04-26
• Primary completion: 2026-10-26
• Completion: 2028-12-31
• First posted: 2023-09-18
• Last updated: 2025-06-18

Locations

26 sites across 16 countries: United States, Australia, Belgium, Canada, France, Germany, Hungary, India, Israel, Italy, Japan, Netherlands, Spain, Switzerland, Turkey (Türkiye), United Kingdom