Registry Following People Born With Congenital Portosystemic Shunts
Collects long-term health information from people with a rare liver blood flow condition.
Plain-language title generated from the registry record
Registry title: International Registry of Congenital Portosystemic Shunt (IRCPSS)
Key facts
- Where
- Geneva, SwitzerlandSee the site
Where in Switzerland
- Hôpitaux Universitaires de Genève (HUG)Geneva, SwitzerlandNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Prof. Valérie Mc Lin
- Trial code
- NCT06041906
- Record updated
- 18 June 2025
- Original description
Congenital Portosystemic Shunt (CPSS) is a rare condition important by the multiplicity and severity of associated complications.Read full original descriptionShow less
International Registry of Congenital Portosystemic Shunts (IRCPSS) - A Multi-centre, Retrospective and Prospective Registry of Neonates, Children and Adults With Congenital Portosystemic Shunts
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.
Inclusion: Individual with CPSS.
Exclusion: Secondary shunt without evidence of congenital shunt.