{"id":2981,"date":"2022-05-11T15:46:10","date_gmt":"2022-05-11T13:46:10","guid":{"rendered":"https:\/\/dev.ircpss.com\/le-registre\/"},"modified":"2025-11-18T09:54:54","modified_gmt":"2025-11-18T08:54:54","slug":"le-registre","status":"publish","type":"page","link":"https:\/\/dev.ircpss.com\/fr\/le-registre\/","title":{"rendered":"Le registre"},"content":{"rendered":"

[vc_row full_width=\u00a0\u00bbstretch_row\u00a0\u00bb css=\u00a0\u00bb.vc_custom_1658395068807{background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}\u00a0\u00bb el_class=\u00a0\u00bbheader-bg\u00a0\u00bb][vc_column offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][vc_empty_space height=\u00a0\u00bb100px\u00a0\u00bb][\/vc_column][\/vc_row][vc_row full_width=\u00a0\u00bbstretch_row\u00a0\u00bb css=\u00a0\u00bb.vc_custom_1658395102960{background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}\u00a0\u00bb el_class=\u00a0\u00bbheader-bg\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/12″][\/vc_column][vc_column width=\u00a0\u00bb10\/12″][vc_column_text]<\/p>\n

Le registre international des shunts porto-syst\u00e9miques<\/span> (IRCPSS)<\/h1>\n

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L’IRCPSS est une base de donn\u00e9es m\u00e9dicale priv\u00e9e<\/strong> aidant les professionnels de sant\u00e9 \u00e0 d\u00e9velopper une meilleure compr\u00e9hension<\/strong> des shunts porto-syst\u00e9miques cong\u00e9nitaux (CPSS).<\/p>\n

L’IRCPSS est une initiative internationale, avec plus de 200 experts et sp\u00e9cialistes r\u00e9partis dans 24 pays.<\/strong><\/p>\n

L’objectif de ce site web est de promouvoir l’IRCPSS et de fournir des ressources<\/strong> \u00e0 un large public, des patients aux professionnels de sant\u00e9.<\/strong>[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/12″][\/vc_column][\/vc_row][vc_row content_placement=\u00a0\u00bbmiddle\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/2″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]<\/p>\n

Quel est l’objectif du registre international des shunts porto-syst\u00e9miques<\/span> (IRCPSS) ?<\/h2>\n

Les centres sp\u00e9cialis\u00e9s du monde entier s’am\u00e9liorent dans la d\u00e9tection des cas de CPSS<\/strong>, mais ils essaient toujours de comprendre les causes et d’identifier quels patients d\u00e9velopperont des signes et des sympt\u00f4mes.<\/strong><\/p>\n

Par cons\u00e9quent, l’objectif du registre est de mieux identifier les patients \u00e0 risque<\/strong> de d\u00e9velopper des complications et de leur offrir des soins standardis\u00e9s.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/2″][vc_single_image image=\u00a0\u00bb2984″ img_size=\u00a0\u00bbfull\u00a0\u00bb add_caption=\u00a0\u00bbyes\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb style=\u00a0\u00bbvc_box_rounded\u00a0\u00bb onclick=\u00a0\u00bblink_image\u00a0\u00bb][\/vc_column][\/vc_row][vc_row gap=\u00a0\u00bb35″ equal_height=\u00a0\u00bbyes\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/3″ css=\u00a0\u00bb.vc_custom_1670577913678{background-color: #e2edff !important;border-radius: 15px !important;}\u00a0\u00bb el_class=\u00a0\u00bbombre-inner\u00a0\u00bb]

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Qu’est-ce que cela signifie pour le patient ?<\/h3>\n

Aucun pr\u00e9l\u00e8vement sanguin ou imagerie suppl\u00e9mentaire n’est requis. Seuls les r\u00e9sultats des examens de routine seront saisis dans le registre. Les donn\u00e9es et les images seront collect\u00e9es dans chaque centre participant et stock\u00e9es dans un registre et un d\u00e9p\u00f4t d’images \u00e0 Gen\u00e8ve, en Suisse.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″ css=\u00a0\u00bb.vc_custom_1658396199462{background-color: #e2edff !important;border-radius: 15px !important;}\u00a0\u00bb el_class=\u00a0\u00bbombre-inner\u00a0\u00bb]

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Protection des donn\u00e9es ?<\/h3>\n

Toutes les donn\u00e9es et images collect\u00e9es dans ce registre sont pseudonymis\u00e9es. Cela signifie qu’aucun nom de patient n’appara\u00eetra, seulement des codes, et seul un tr\u00e8s petit nombre de sp\u00e9cialistes auront la cl\u00e9 de d\u00e9cryptage. Chaque centre participant obtient une autorisation \u00e9thique pour inclure des patients dans le registre.[\/vc_column_text][\/vc_column][vc_column width=\u00a0\u00bb1\/3″ css=\u00a0\u00bb.vc_custom_1658396206182{background-color: #e2edff !important;border-radius: 15px !important;}\u00a0\u00bb el_class=\u00a0\u00bbombre-inner\u00a0\u00bb]

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Qui peut participer ?<\/h3>\n

Les nourrissons, les enfants et les adultes atteints de shunts porto-syst\u00e9miques cong\u00e9nitaux ou ayant des ant\u00e9c\u00e9dents de CPSS sont invit\u00e9s \u00e0 participer.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][vc_empty_space height=\u00a0\u00bb20px\u00a0\u00bb][\/vc_column][\/vc_row][vc_row][vc_column offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][vc_single_image image=\u00a0\u00bb2985″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb style=\u00a0\u00bbvc_box_rounded\u00a0\u00bb][\/vc_column][\/vc_row][vc_row][vc_column offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][vc_separator color=\u00a0\u00bbblack\u00a0\u00bb border_width=\u00a0\u00bb2″ el_width=\u00a0\u00bb80″ css=\u00a0\u00bb\u00a0\u00bb][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]<\/p>\n

Pays participants<\/span><\/h2>\n

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54 centres participants dans 23 pays<\/h3>\n

[\/vc_column_text][vc_row_inner][vc_column_inner width=\u00a0\u00bb3\/12″ offset=\u00a0\u00bbvc_col-xs-4″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]Argentine<\/a>
\nAustralie<\/a>
\nBelgique<\/a>
\nBr\u00e9sil<\/a>
\nCanada<\/a>
\nFrance<\/a>
\nAllemagne<\/a>
\nGr\u00e8ce<\/a>[\/vc_column_text][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb3\/12″ offset=\u00a0\u00bbvc_col-xs-4″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]Hongrie<\/a>
\nInde<\/a>
\nIsra\u00ebl<\/a>
\nItalie<\/a>
\nJapon<\/a>
\nPortugal<\/a>
\nRoumanie<\/a>
\nEspagne<\/a>[\/vc_column_text][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb3\/12″ offset=\u00a0\u00bbvc_col-xs-4″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]Suisse<\/a>
\nPays-Bas<\/a>
\nRoyaume-Uni<\/a>
\nTurquie<\/a>
\n\u00c9mirats arabes unis<\/a>
\n\u00c9tats-Unis<\/a>
\nOuzb\u00e9kistan<\/a>[\/vc_column_text][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb3\/12″ offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][\/vc_column_inner][\/vc_row_inner][vc_column_text]Cliquez sur une \u00e9pingle sur la carte ci-dessous<\/strong> pour obtenir plus de d\u00e9tails.[\/vc_column_text][vc_column_text]

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Vasiliki spyropoulou<\/h4><\/a>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div><\/div>[\/vc_column_text][\/vc_column][\/vc_row][vc_row gap=\u00a0\u00bb35″ equal_height=\u00a0\u00bbyes\u00a0\u00bb content_placement=\u00a0\u00bbmiddle\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/2″][vc_single_image image=\u00a0\u00bb97″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb style=\u00a0\u00bbvc_box_rounded\u00a0\u00bb][\/vc_column][vc_column width=\u00a0\u00bb1\/2″][vc_column_text css=\u00a0\u00bb.vc_custom_1707466511542{margin-bottom: 5px !important;}\u00a0\u00bb]<\/p>\n

Investigateur principal<\/h3>\n

Prof. Val\u00e9rie McLin<\/strong><\/p>\n

H\u00f4pitaux Universitaires de Gen\u00e8ve
\nDpt P\u00e9diatrie, Serv. sp\u00e9cialit\u00e9s p\u00e9diatriques
\nRue Gabrielle-Perret-Gentil 4
\n1211 Gen\u00e8ve 4, Suisse
\n<\/a>[\/vc_column_text][vc_btn title=\u00a0\u00bbContact\u00a0\u00bb style=\u00a0\u00bbcustom\u00a0\u00bb custom_background=\u00a0\u00bb#4767e7″ custom_text=\u00a0\u00bb#ffffff\u00a0\u00bb css=\u00a0\u00bb\u00a0\u00bb link=\u00a0\u00bburl:https%3A%2F%2Fdev.ircpss.com%2Flocal-experts%2Fvalerie-mclin%2F|title:Val%C3%A9rie%20McLin|\u00a0\u00bb][vc_column_text css=\u00a0\u00bb.vc_custom_1707466531809{margin-bottom: 5px !important;}\u00a0\u00bb]<\/p>\n

Pour des questions g\u00e9n\u00e9rales ou d’adh\u00e9sion<\/h3>\n

Simona Korff, PhD<\/strong><\/p>\n

[\/vc_column_text][vc_btn title=\u00a0\u00bbContact\u00a0\u00bb style=\u00a0\u00bbcustom\u00a0\u00bb custom_background=\u00a0\u00bb#4767e7″ custom_text=\u00a0\u00bb#ffffff\u00a0\u00bb css=\u00a0\u00bb\u00a0\u00bb link=\u00a0\u00bburl:https%3A%2F%2Fdev.ircpss.com%2Ffr%2Fcontact%2F|title:Contacter%20l%27IRCPSS|\u00a0\u00bb][\/vc_column][\/vc_row][vc_row][vc_column offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][vc_empty_space height=\u00a0\u00bb10px\u00a0\u00bb][vc_separator color=\u00a0\u00bbblack\u00a0\u00bb border_width=\u00a0\u00bb2″ el_width=\u00a0\u00bb80″ css=\u00a0\u00bb\u00a0\u00bb][\/vc_column][\/vc_row][vc_row][vc_column offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][vc_empty_space height=\u00a0\u00bb20px\u00a0\u00bb][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]<\/p>\n

Comit\u00e9<\/span> directeur<\/strong><\/h2>\n

[\/vc_column_text][vc_row_inner gap=\u00a0\u00bb35″][vc_column_inner width=\u00a0\u00bb1\/2″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]Maurice Beghetti<\/strong> (cardiologie p\u00e9diatrique) – Gen\u00e8ve, Suisse
\nMarc Blondon<\/strong> (angiologie) – Gen\u00e8ve, Suisse
\nDominique Debray<\/strong><\/a> (h\u00e9patologie p\u00e9diatrique) – Paris, France
\nValeria Casotti<\/strong><\/a> (h\u00e9patologie p\u00e9diatrique) – Bergame, Italie
\nJean de Ville de Goyet<\/strong><\/a> (Chirurgie) \u2013 Palerme, Italie
\nGr\u00e9goire Dumery<\/strong> (obst\u00e9trique) \u2013 Paris, France
\nSt\u00e9phanie Franchi-Abella<\/strong><\/a> (radiologie interventionnelle) – Paris, France
\nEmmanuel Gonzales<\/strong> (h\u00e9patologie p\u00e9diatrique) – Paris, France
\nFlorent Guerin<\/strong><\/a> (chirurgie p\u00e9diatrique) – Paris, France
\nHenri Justino<\/strong><\/a> (cardiologie interventionnelle) \u2013 San Diego – \u00c9tats-Unis
\nMureo Kasahara<\/strong><\/a> (chirurgie p\u00e9diatrique) – Tokyo, Japon
\nSimona Korff<\/strong> (gestion de la recherche clinique) – Gen\u00e8ve, Suisse
\nJos\u00e9 Lipsich<\/strong><\/a> (radiologie interventionnelle) – Buenos Aires, Argentine
\nVirginie Lambert<\/strong> (cardiologie) – Paris, France[\/vc_column_text][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb1\/2″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]Periklis Makrythanasis<\/strong> (g\u00e9n\u00e9tique) – Ath\u00e8nes, Gr\u00e8ce
\nPaolo Mara<\/strong><\/a> (chirurgie p\u00e9diatrique) – Bergame, Italie
\nVal\u00e9rie McLin<\/strong><\/a> (h\u00e9patologie p\u00e9diatrique) – Gen\u00e8ve, Suisse
\nYael Mozer-Glassberg<\/strong><\/a> (h\u00e9patologie p\u00e9diatrique) – Petach Tikvah, Isra\u00ebl
\nAur\u00e9lie Plessier <\/strong>(h\u00e9patologie p\u00e9diatrique) – Paris, France
\nMaxime Ronot<\/a> <\/strong>(radiologie interventionnelle) \u2013 Paris, France
\nAnne-Laure Rougemont-Pidoux<\/strong> (pathologie) – Gen\u00e8ve, Suisse
\nLaurent Savale<\/strong> (pneumologie) – Paris, France
\nFrank van Steenbeek<\/strong> (G\u00e9n\u00e9tique) – Utrecht, Pays-Bas
\nRic Superina<\/strong><\/a> (chirurgie p\u00e9diatrique) – Chicago, \u00c9tats-Unis
\nMirjam van Albada<\/strong> (Endocrinologie) – Groningue, Pays-Bas
\nJulie Wacker<\/strong> (cardiologie p\u00e9diatrique) \u2013 Gen\u00e8ve, Suisse
\nBarbara E. Wildhaber<\/strong><\/a> (chirurgie p\u00e9diatrique) – Gen\u00e8ve, Suisse[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]<\/p>\n

Comit\u00e9<\/span> consultatif<\/strong><\/h2>\n

[\/vc_column_text][vc_row_inner gap=\u00a0\u00bb35″][vc_column_inner width=\u00a0\u00bb1\/2″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]Le Comit\u00e9 directeur est assist\u00e9 par l’expertise des membres du Comit\u00e9 consultatif (CC) qui comprend des experts dans les disciplines pertinentes pour \u00e9valuer l’histoire naturelle des shunts porto-syst\u00e9miques cong\u00e9nitaux (CPSS)[\/vc_column_text][\/vc_column_inner][vc_column_inner width=\u00a0\u00bb1\/2″][vc_column_text css=\u00a0\u00bb.vc_custom_1734447252712{margin-bottom: 0px !important;}\u00a0\u00bb]<\/p>\n

Olivia Boyer<\/strong> (n\u00e9phrologie)
\nMarco Colledan<\/strong> (chirurgie)
\nMark Davenport<\/strong><\/a> (chirurgie)
\nCatherine Guettier<\/strong> (pathologie)
\nHubert van der Doef<\/strong> (H\u00e9patologie)
\nChristian Korff<\/strong> (neurologie p\u00e9diatrique)
\nFr\u00e9d\u00e9ric Lador<\/strong> (pneumologie)
\nH\u00e9l\u00e8ne Maurey<\/strong> (neurologie p\u00e9diatrique)<\/p>\n

[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column offset=\u00a0\u00bbvc_hidden-xs\u00a0\u00bb][vc_empty_space height=\u00a0\u00bb10px\u00a0\u00bb][vc_separator color=\u00a0\u00bbblack\u00a0\u00bb border_width=\u00a0\u00bb2″ el_width=\u00a0\u00bb80″ css=\u00a0\u00bb\u00a0\u00bb][vc_empty_space height=\u00a0\u00bb10px\u00a0\u00bb][\/vc_column][\/vc_row][vc_row gap=\u00a0\u00bb35″ content_placement=\u00a0\u00bbmiddle\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/2″][vc_single_image image=\u00a0\u00bb2983″ img_size=\u00a0\u00bbfull\u00a0\u00bb alignment=\u00a0\u00bbcenter\u00a0\u00bb style=\u00a0\u00bbvc_box_rounded\u00a0\u00bb][\/vc_column][vc_column width=\u00a0\u00bb1\/2″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb]<\/p>\n

La base de donn\u00e9es<\/span><\/h2>\n

La plateforme du registre est SecuTrial\u00a9<\/strong>, une interface web qui r\u00e9pond aux normes de s\u00e9curit\u00e9 internationales les plus exigeantes.<\/strong><\/p>\n

La conception et la maintenance de la base de donn\u00e9es sont effectu\u00e9es par le Centre de Recherche Clinique<\/strong> (CRC) et les H\u00f4pitaux Universitaires de Gen\u00e8ve<\/strong> (HUG). Le CRC poss\u00e8de une expertise dans l’utilisation de SecuTrial\u00a9 pour la conception et la maintenance de bases de donn\u00e9es et d’essais cliniques. <\/p>\n

Le d\u00e9p\u00f4t d’images est h\u00e9berg\u00e9 sur un serveur PACS compatible DICOM situ\u00e9 dans le centre de donn\u00e9es du Campus Biotech \u00e0 Gen\u00e8ve sous la responsabilit\u00e9 de l’Institut de l’Imagerie Mol\u00e9culaire Translationnelle (ITMI).<\/p>\n

L’institut est affili\u00e9 \u00e0 l’Universit\u00e9 de Gen\u00e8ve<\/strong> et \u00e0 l’\u00c9cole Polytechnique F\u00e9d\u00e9rale de Lausanne<\/strong> (EPFL).<\/p>\n

[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

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