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.

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.

50 participating centers in 21 countries Argentina (1), Australia (1), Belgium (2), Canada (2), France (5), Germany (4), Greece (2), India (2), Israel (2), Italy (5), Japan (1), The Netherlands (3), Portugal (1), Romania (1), Spain (1), Sweden (1), Switzerland (2), Turkey (3), The United Kingdom (5), The United States of America (5) and Uzbekistan (1)




Principal Investigator Prof. Valérie McLin
Hôpitaux Universitaires de Genève
Dpt Pédiatrie, Serv. spécialités pédiatriques
Rue Gabrielle-Perret-Gentil 4
1211 Geneva 4, Switzerland
E-mail: Valerie.McLin@hcuge.ch

Contact:
For general or membership questions: Simona Korff, PhD
E-mail: Simona.Korff@hcuge.ch






Maurice Beghetti (Pediatric Cardiology)
Lorenzo D'Antiga (Pediatric Hepatology)
Dominique Debray (Pediatric Hepatology)
Stéphanie Franchi-Abella (Interventional Radiology)
Emmanuel Gonzales (Pediatric Hepatology)
Florent Guerin (Pediatric Surgery)
Anne-Lise Hachulla Lemaire (Interventional Radiology)
Virginie Lambert (Cardiology)
Valérie McLin (Pediatric Hepatology)
Periklis Makrythanasis (Genetics)
Laurent Savale (Pulmonology)
Marie-Victoire Senat (Obstetrics)
Frank van Steenbeek (Genetics)
Barbara E. Wildhaber (Pediatric Surgery)




The Steering Committee is assisted by the expertise of members of the Advisory Committee (AC) which includes experts in disciplines relevant to assessing the natural history of congenital porto-systemic shunts (CPSS):

Olivia Boyer (Nephrology)
Marco Colledan (Surgery)
Mark Davenport (Surgery)
Jean de Ville de Goyet (Surgery)
Catherine Guettier (Pathology)
Hubert van der Doef (Hepatology)
Christian Korff (Pediatric Neurology)
Virginie Lambert (Pediatric Cardiology)
Frédéric Lador (Pulmonology)
Hélène Maurey (Pediatric Neurology)
Aurélie Plessier (Hepatology and vascular liver diseases)
Maxime Ronot (Radiology)
Anne-Laure Rougemont (Pathology)



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), 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).f Translational Molecular Imaging (ITMI). This institute is affiliated with the University of Geneva and the Swiss Federal Institute of Technology (EPFL).