The International Registry of Porto-Systemic Shunts (IRCPSS)
The IRCPSS is a private medical database helping health professionals develop a better understanding of Congenital Porto-Systemic Shunts (CPSS).
IRCPSS is an international initiative, with more than 200 experts and specialists around 24 countries.
The aim of this website is to promote the IRCPSS and to provide ressources for a wide audience, from patients to health professional.
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.
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.
Data protection?
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.
Participating countries
54 participating centers in 23 countries
Click on a pin on the map below to get more details.
Executive Committee
The Executive Committee (EC) is responsible for the practical functioning, financial management, and administrative aspects, ensuring smooth day-to-day operations. The EC is the executive body of the SC, responsible for implementing the strategic orientations and directives adopted by the SC. Any decision concerning governance and the strategic development of the IRCPSS is be referred to the Steering Committee (SC) for formal approval by vote.
At the decision-making level, the EC participates fully in the deliberations of the SC and SPC, and its members exercise their voting rights concurrently with those of the SC and SPC.The Executive Committee (EC) is responsible for the practical functioning, financial management, and administrative aspects, ensuring smooth day-to-day operations.
The EC is the executive body of the SC, responsible for implementing the strategic orientations and directives adopted by the SC. Any decision concerning governance and the strategic development of the IRCPSS is be referred to the Steering Committee (SC) for formal approval by vote. At the decision-making level, the EC participates fully in the deliberations of the SC and SPC, and its members exercise their voting rights concurrently with those of the SC and SPC.
Members:
Chair: Valérie McLin
Scientific Advisor: Dominique Debray
Scientific Advisor: Stéphanie Franchi-Abella
Operations Coordinator: Simona Korff
Grants and finance manager: Isabelle Schepens
Steering Committee
The Steering Committee (SC) oversees strategic development, planning, sustainability, and scientific productivity of the IRCPSS.
Its responsibilities include ensuring data quality, providing scientific oversight of the overall research directions, contributing to fund-raising efforts, promoting IRCPSS activities and publications, raising awareness of CPSS and fostering interdisciplinary collaborations.
SC members mentor junior members engaging in projects. The SC ensures proper implementation of the Memorandum of Understanding.
The SC includes the members of the Executive committee, the Operations Coordinator and Grants and finance manager of the Sponsor team, as well as at least one representative of the SPC*.
They all exercise their voting rights in the deliberations of the SC.
Chair
Chair: Paolo Marra
Co-chair: Yael Mozer
Members
Cardiology:
Julie Wacker
Hepatology:
Valeria Casotti
Yaël Mozer
Giusy Ranucci*
Oanez Ackermann
Surgery:
Jean de Ville de Goyet
Florent Guérin*
Ric Superina*
Hajime Uchida
Barbara E. Wildhaber
Members
Interventional Radiology:
Paolo Marra
Alexis Ricoeur
Obstetrics:
Grégoire Dumery
Genetics:
Frank van Steenbeek
Pathology:
Anne-Laure Rougemont-Pidoux
Endocrinology:
Mirjam van Albada
The database
The registry platform is SecuTrial©, a web-based interface which meets the most demanding international security standards.
Database design and maintenance is performed by the Clinical Research Center (CRC) and the University Hospitals Geneva (HUG). The CRC has expertise using SecuTrial© for the design and maintenance of databases and clinical trials.
The image repository is hosted on a DICOM-compliant PACS server located in the data center of the Campus Biotech in Geneva under the responsibility of the Institute ois hosted on a DICOM-compliant PACS server located in the data center of the Campus Biotech in Geneva under the responsibility of the Institute of Translational Molecular Imaging (ITMI).
The institute is affiliated with the University of Geneva and the Swiss Federal Institute of Technology (EPFL).