What is the purpose of the International Registry of Porto-Systemic Shunts (IRCPSS)?
Specialized centers around the world are getting better at detecting CPSS cases, but they are still trying to understand the causes and learn which patients will develop signs and symptoms. Therefore the aim of the registry is to better identify patients who are at risk for developing complications and to offer them standardized care.
IRCPSS- what does it mean for the patient?
No additional blood draws or imaging is required. Only results from routine exams will be entered into the registry. Data and images will be collected at each participating center and stored in a registry and image repository in Geneva, Switzerland.
All data and images collected in this registry are pseudonymised. That means no patient name will appear, only codes, and only a very small number of specialists will have the decryption key. Each participating center obtains ethical clearance to include patients in the registry.
Who can participate?
Infants, children and adults with congenital porto-systemic shunts or a history of a CPSS are welcome to participate.