{"id":12972,"date":"2021-04-29T21:03:12","date_gmt":"2021-04-29T21:03:12","guid":{"rendered":"https:\/\/clone.arsacs.com\/?page_id=12972"},"modified":"2026-08-28T14:31:47","modified_gmt":"2026-08-28T18:31:47","slug":"foire-aux-questions","status":"publish","type":"page","link":"https:\/\/arsacs.com\/fr\/frequently-asked-questions\/","title":{"rendered":"Foire aux questions"},"content":{"rendered":"<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section\">\r\n\r\n<div class=\"et_pb_row_0 et_pb_row et_block_row\">\r\n\r\n<div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\">\r\n\r\n<div class=\"dipl_faq_page_schema_0 dipl_faq_page_schema et_pb_module\">\n\t\t\t<div class=\"dipl_faq_wrapper dipl_faq_grid dipl_faq_col_1\"  itemscope itemtype=\"https:\/\/schema.org\/FAQPage\">\n\t\t\t\t\r\n\r\n<div class=\"dipl_faq_page_schema_item_0 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Qu'est-ce qu'un registre de patients ?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>Un registre de patients est une banque de donn\u00e9es sur les individus qui ont une maladie sp\u00e9cifique. Le registre international ARSACS s\u2019adresse aux personnes atteintes de l\u2019ataxie spastique autosomique r\u00e9cessive de Charlevoix-Saguenay (ARSACS). Le registre international des patients ARSACS est parrain\u00e9 par la Fondation de l\u2019Ataxie Charlevoix-Saguenay, un organisme de bienfaisance.<\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\r\n\r\n<div class=\"dipl_faq_page_schema_item_1 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Quels sont les avantages de s\u2019inscrire au registre des patients ARSACS ?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>En vous inscrivant au registre international des patients ARSACS, vous serez tenus au courant de tout d\u00e9veloppement majeur et des possibilit\u00e9s d\u2019essais cliniques. De plus, ce registre permet de construire un r\u00e9seau international qui contribue indirectement une plus grande visibilit\u00e9  dans le milieu, telle qu\u2019accro\u00eetre la notori\u00e9t\u00e9 de la maladie, augmenter les occasions de financement pour la recherche, susciter l\u2019int\u00e9r\u00eat des chercheurs et surtout de l\u2019industrie pharmaceutique.<\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\r\n\r\n<div class=\"dipl_faq_page_schema_item_2 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Un participant peut-il \u00eatre inscrit \u00e0 plusieurs registres ?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>Oui. La participation au registre est volontaire et un participant peut \u00eatre inscrit \u00e0 plusieurs registres.<\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\r\n\r\n<div class=\"dipl_faq_page_schema_item_3 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Y a-t-il un risque que les renseignements personnels recueillis dans le registre soient divulgu\u00e9s ?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>La Fondation de l\u2019Ataxie Charlevoix-Saguenay prend toutes les mesures n\u00e9cessaires pour s\u2019assurer que les informations personnelles du patient soient prot\u00e9g\u00e9es.<\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\r\n\r\n<div class=\"dipl_faq_page_schema_item_4 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Qui a acc\u00e8s aux donn\u00e9es?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>Uniquement l\u2019administrateur du registre de la Fondation de l\u2019Ataxie Charlevoix-Saguenay a acc\u00e8s aux informations personnelles des participants. Aucun chercheur ou m\u00e9decin n\u2019a acc\u00e8s \u00e0 l\u2019identit\u00e9 ou aux renseignements personnels d\u2019un participant. Toutes les donn\u00e9es seront au niveau agr\u00e9g\u00e9. Aucune information individuelle sp\u00e9cifique ne sera divulgu\u00e9e.<\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\r\n\r\n<div class=\"dipl_faq_page_schema_item_5 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Comment mes informations personnelles seront-elles mises \u00e0 jour?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>Le participant pourra mettre \u00e0 jour ses informations tout au long de l\u2019ann\u00e9e en envoyant un courriel \u00e0 <span style=\"text-decoration: underline;\"><a href=\"mailto:administrator@arsacs.com\" target=\"_blank\" rel=\"noopener\">administrator@arsacs.com<\/a><\/span>De plus, l\u2019administrateur du registre enverra une fois par ann\u00e9e un courriel au participant pour valider ses informations contenues dans le registre.<\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\r\n\r\n<div class=\"dipl_faq_page_schema_item_6 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Un participant peut-il retirer son inscription du registre?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>L\u2019inscription est sur une base volontaire et un participant peut demander \u00e0 se soustraire du registre \u00e0 tout moment. Le participant doit informer l\u2019administrateur du registre de la Fondation de l\u2019Ataxie Charlevoix-Saguenay de sa d\u00e9cision de se retirer du registre en envoyant un courriel \u00e0 : <span style=\"text-decoration: underline;\"><a href=\"mailto:administrator@arsacs.com\" target=\"_blank\" rel=\"noopener\">administrator@arsacs.com<\/a><\/span><\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\r\n\r\n<div class=\"dipl_faq_page_schema_item_7 dipl_faq_page_schema_item et_pb_module\"><div class=\"dipl_faq_item_wrapper\" itemscope itemprop=\"mainEntity\" itemtype=\"https:\/\/schema.org\/Question\"><div class=\"dipl_question_wrapper\"><h4 itemprop=\"name\">Qui le participant devrait-il contacter concernant ses questions ou pr\u00e9occupations?<\/h4><\/div>\n\t\t\t\t<div class=\"dipl_answer_wrapper\" itemscope itemprop=\"acceptedAnswer\" itemtype=\"https:\/\/schema.org\/Answer\">\n\t\t\t\t\t<div itemprop=\"text\"><p>Le participant devrait contacter l\u2019administrateur du registre de la Fondation de l\u2019Ataxie Charlevoix-Saguenay pour toute question ou pr\u00e9occupation concernant le registre en envoyant un courriel \u00e0: <span style=\"text-decoration: underline;\"><a href=\"mailto:administrator@arsacs.com\" target=\"_blank\" rel=\"noopener\">administrator@arsacs.com<\/a><\/span><\/p>\n<\/div>\n\t\t\t\t<\/div><\/div><\/div>\n\t\t\t<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":26763,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-12972","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/pages\/12972","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/comments?post=12972"}],"version-history":[{"count":13,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/pages\/12972\/revisions"}],"predecessor-version":[{"id":26523,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/pages\/12972\/revisions\/26523"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/media\/26763"}],"wp:attachment":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/media?parent=12972"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}