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International Registry of Congenital Portosystemic Shunt (IRCPSS)
Sponsor: Prof. Valérie Mc Lin
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.
Official title: International Registry of Congenital Portosystemic Shunts (IRCPSS) - A Multi-centre, Retrospective and Prospective Registry of Neonates, Children and Adults With Congenital Portosystemic Shunts
Key Details
Gender
All
Age Range
1 Day - Any
Study Type
OBSERVATIONAL
Enrollment
500
Start Date
2018-04-26
Completion Date
2028-12-31
Last Updated
2025-06-18
Healthy Volunteers
No
Interventions
Shunt Closure
Consist in spontaneous, surgical or interventional closure of the shunt. Depending on context, surgical intervention may also be transplantation.
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
Hanover, Germany
Haunersche Kinderklinik - LMU Munich
Munich, Germany
University of Tuebingen
Tübingen, Germany
First Department of Pediatrics, Semmelweis University
Budapest, Hungary
Amrita institute of Medical Sciences
Kochi, Kerala, India
Department of Pediatric Hepatology Institute of Liver and Biliary Sciences
New Delhi, India
Schneider Children's Medical Center of Israel
Petach Tikvah, Israel
Papa Giovanni XXIII Hospital
Bergamo, Italy
Children's Hospital Santobono
Naples, Italy
Istituto di Ricovero e Cura a Carattere Scientifico (ISMETT)
Palermo, Italy
National Center for Child Health and Development
Tokyo, Japan
Academic Medical Centre
Amsterdam, Netherlands
University Medical Center Groningen
Groningen, Netherlands
Hospital Clínic de Barcelona
Barcelona, Spain
Hôpitaux Universitaires de Geneve (HUG)
Geneva, Canton of Geneva, Switzerland
Gazi University, Faculty of Medicine
Yenimahalle, Ankara, Turkey (Türkiye)
Birmingham Children's Hospital
Birmingham, United Kingdom
Royal Hospital for Children and Young People
Edinburgh, United Kingdom