What is the purpose of the International Registry of Porto-Systemic Shunts (IRCPSS)?
Although the number of CPSS cases detected in specialized centers is increasing, little is understood about the underlying causes and about 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 will be required for the patient. Only results from routine exams will be entered into the registry. Data and images will be collected at each participating center. Data will be stored in a registry and images in a repository, both based in Geneva, Switzerland.
All data and images collected in this registry are pseudonymised, i.e. no name will appear, only codes, of which 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?
Neonates, children and adults with congenital porto-systemic shunts or a history of a CPSS.