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Enrolling by invitationNo phase

Registry Following People Born With Congenital Portosystemic Shunts

Collects long-term health information from people with a rare liver blood flow condition.

Key facts

Who runs it
Prof. Valérie Mc Lin
Where
Toronto, CanadaSee the siteAlso in 15 other countries, 25 sites
Trial code
Registry title
International Registry of Congenital Portosystemic Shunt (IRCPSS)
Status
Enrolling by invitation
People taking part
500 people, planned
Started
26 Apr 2018
Expected to end
31 Dec 2028
Type of study
Observational
Treatments tested
  • Shunt Closure
Record updated
18 June 2025

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The registry is looking for people of any age who have a congenital portosystemic shunt (CPSS). It collects their clinical and biological information over time.

Age
From 1 Day old, no upper age limit stated.
Sex
All sexes can join.
Disease stage
Congenital portosystemic shunt (CPSS), a vein abnormality present from birth.

Main reasons for not taking part

  • Secondary shunt without evidence of a congenital shunt

The registry criteria, word for word

Show all 2 criteriaShow less

Who can take part

  • Individual with CPSS

Who cannot take part

  • Secondary shunt without evidence of congenital shunt

Where in Canada

Also in 15 other countries, 25 sites

  • The Hospital for Sick ChildrenToronto, CanadaNo longer taking part

About the trial

What the trial wants to find out

Congenital Portosystemic Shunt (CPSS) is a rare condition important by the multiplicity and severity of associated complications.

Read full original descriptionShow less

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.

The group in the trial

  • Neonate, Children, Adult with CPSS

    Treatment: Shunt Closure

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
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
Plain-language title
Registry Following People Born With Congenital Portosystemic ShuntsGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
18 June 2025