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International Registry of Congenital Portosystemic Shunt (IRCPSS)

Conditions
Congenital Portosystemic Shunt
CPSS (Congenital Portosystemic Shunt)
Interventions
Procedure: Shunt Closure
Registration Number
NCT06041906
Lead Sponsor
Prof. Valérie Mc Lin
Brief 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.

Detailed Description

Not available

Recruitment & Eligibility

Status
ENROLLING_BY_INVITATION
Sex
All
Target Recruitment
500
Inclusion Criteria

Individual with CPSS

Exclusion Criteria

Secondary shunt without evidence of congenital shunt

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Arm && Interventions
GroupInterventionDescription
Neonate, Children, Adult with CPSSShunt Closure-
Primary Outcome Measures
NameTimeMethod
Number of patients developing one or more complications5; 10; 20 years
Numbers of patients with spontaneous shunt closure3; 6; 12; 24 months
Number of patients undergoing preemptive closure6; 12; 24 months
Secondary Outcome Measures
NameTimeMethod

Trial Locations

Locations (26)

Yale University School of Medicine

🇺🇸

New Haven, Connecticut, United States

Lurie Children's Hospital

🇺🇸

Chicago, Illinois, United States

Royal Children's Hospital Melbourne

🇦🇺

Parkville, Victoria, Australia

Universitary Clinics Saint-Luc, UCL

🇧🇪

Brussels, Belgium

The Hospital for Sick Children

🇨🇦

Toronto, Ontario, Canada

Beaujon University Hospital

🇫🇷

Clichy, France

Hôpital Bicêtre-Hôpitaux Universitaires Paris-Sud- Assistance Publique Hôpitaux de Paris.

🇫🇷

Le Kremlin-Bicêtre, France

Hôpital Necker

🇫🇷

Paris, France

Hannover Medical School

🇩🇪

Hannover, Germany

Haunersche Kinderklinik - LMU Munich

🇩🇪

Munich, Germany

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Yale University School of Medicine
🇺🇸New Haven, Connecticut, United States
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