[et_pb_section fb_built=”1″ custom_padding_last_edited=”on|tablet” next_background_color=”#ffffff” admin_label=”Hero” _builder_version=”4.8.2″ use_background_color_gradient=”on” background_color_gradient_start=”rgba(255,255,255,0)” background_color_gradient_end=”#26a9e4″ background_color_gradient_type=”radial” background_color_gradient_direction_radial=”top right” background_color_gradient_start_position=”20%” background_color_gradient_overlays_image=”on” background_image=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/03\/banner-general-1-scaled.jpg” custom_padding=”47px|0px|87px|0px|false|false” custom_padding_tablet=”50px||50px||true” custom_padding_phone=”|||” bottom_divider_style=”asymmetric” bottom_divider_height=”50px” bottom_divider_flip=”horizontal” bottom_divider_height_tablet=”90px” bottom_divider_height_phone=”80px”][et_pb_row column_structure=”2_3,1_3″ _builder_version=”3.25″ custom_width_px=”1280px”][et_pb_column type=”2_3″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.8.2″ text_font=”Montserrat||||||||” text_text_color=”rgba(255,255,255,0.7)” text_font_size=”20px” text_line_height=”1.8em” header_font=”Montserrat|700|||||||” header_font_size=”44px” header_line_height=”1.4em” header_6_font=”Montserrat|600||on|||||” header_6_text_color=”rgba(255,255,255,0.7)” header_6_font_size=”16px” header_6_letter_spacing=”2px” header_6_line_height=”1.5em” background_layout=”dark” max_width=”780px” min_height=”39px” text_font_size_tablet=”” text_font_size_phone=”15px” text_font_size_last_edited=”on|phone” header_font_size_tablet=”” header_font_size_phone=”28px” header_font_size_last_edited=”on|phone”]<\/p>\n
[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Contact Info” _builder_version=”4.8.2″ background_enable_color=”off” background_color_gradient_direction=”0deg” min_height=”417px” custom_padding=”|||”][et_pb_row _builder_version=”4.8.2″ _module_preset=”default”][et_pb_column type=”4_4″ _builder_version=”4.8.2″ _module_preset=”default”][et_pb_toggle title=”Qu\u2019est-ce qu\u2019un registre de patients?” _builder_version=”4.9.4″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||”]<\/p>\n
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
[\/et_pb_toggle][et_pb_toggle title=”Quels sont les avantages de s\u2019inscrire au registre des patients ARSACS ?” _builder_version=”4.9.4″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||”]<\/p>\n
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 en accordant indirectement une plus grande r\u00e9sonance 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
[\/et_pb_toggle][et_pb_toggle title=”Un participant peut-il \u00eatre inscrit \u00e0 plusieurs registres?” _builder_version=”4.8.2″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||”]<\/p>\n
Oui. La participation au registre est volontaire et un participant peut \u00eatre inscrit \u00e0 plusieurs registres.<\/p>\n
[\/et_pb_toggle][et_pb_toggle title=”Y a-t-il un risque que les renseignements personnels recueillis dans le registre soient divulgu\u00e9s?” _builder_version=”4.8.2″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||”]<\/p>\n
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.<\/span><\/p>\n [\/et_pb_toggle][et_pb_toggle title=”Qui a acc\u00e8s aux donn\u00e9es?” _builder_version=”4.9.4″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||”]<\/p>\n 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 [\/et_pb_toggle][et_pb_toggle title=”Comment mes informations personnelles seront-elles mises \u00e0 jour?” _builder_version=”4.8.2″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||”]<\/p>\n Le participant pourra mettre \u00e0 jour ses informations tout au long de l\u2019ann\u00e9e en envoyant un courriel \u00e0<\/span> administrateur@<\/strong>arsacs.com<\/strong>.<\/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.<\/span><\/p>\n [\/et_pb_toggle][et_pb_toggle title=”Un participant peut-il retirer son inscription du registre?” _builder_version=”4.9.4″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||” hover_enabled=”0″ sticky_enabled=”0″]<\/p>\n 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 : administrateur@arsacs.com<\/strong><\/p>\n [\/et_pb_toggle][et_pb_toggle title=”Qui le participant devrait-il contacter concernant ses questions ou pr\u00e9occupations?” _builder_version=”4.8.2″ _module_preset=”default” title_level=”h2″ title_font=”|700|||||||”]<\/p>\n 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: administrateur@arsacs.com<\/strong><\/p>\n [\/et_pb_toggle][et_pb_button button_url=”https:\/\/arsacs.com\/fr\/inscription\/” button_text=”S’inscrire ici” _builder_version=”4.8.2″ _module_preset=”default”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”off|desktop” prev_background_color=”#ffffff” admin_label=”Footer” module_id=”contact-footer” _builder_version=”4.8.2″ use_background_color_gradient=”on” background_color_gradient_start=”rgba(40,167,227,0.5)” background_color_gradient_end=”rgba(255,255,255,0)” background_color_gradient_type=”radial” background_color_gradient_direction_radial=”top right” background_color_gradient_overlays_image=”on” background_image=”https:\/\/arsacs.com\/wp-content\/uploads\/2021\/02\/subscribe.png” custom_padding=”100px||100px||true” top_divider_style=”asymmetric” top_divider_height=”50px” top_divider_flip=”vertical|horizontal” global_module=”10732″ saved_tabs=”all”][et_pb_row column_structure=”1_4,1_4,1_2″ use_custom_gutter=”on” gutter_width=”1″ make_equal=”on” module_id=”contact-arsacs” _builder_version=”4.9.4″][et_pb_column type=”1_4″ _builder_version=”4.8.2″ custom_padding=”2vw||||false|false” custom_padding__hover=”|||”][et_pb_blurb use_icon=”on” font_icon=”%%249%%” icon_color=”#52a2ec” use_circle=”on” circle_color=”#FFFFFF” content_max_width=”570px” use_icon_font_size=”on” icon_font_size=”20px” _builder_version=”4.8.2″ header_font=”Montserrat||||||||” header_font_size=”16px” header_line_height=”1.5em” body_font=”Montserrat||||||||” body_text_color=”rgba(206,206,206,0.9)” body_font_size=”16px” body_line_height=”1.5em” text_orientation=”center” background_layout=”dark” custom_margin=”|||” custom_padding=”|||” border_radii=”on|10px|10px|10px|10px” locked=”off”]<\/p>\n 1000 Sherbrooke O, bur. 2100, Montr\u00e9al, QC H3A 3G4<\/p>\n [\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.8.2″ custom_padding=”2vw||||false|false” custom_padding__hover=”|||”][et_pb_blurb use_icon=”on” font_icon=”%%238%%” icon_color=”#52a2ec” use_circle=”on” circle_color=”#FFFFFF” content_max_width=”570px” use_icon_font_size=”on” icon_font_size=”20px” _builder_version=”4.8.2″ header_font=”Montserrat||||||||” header_font_size=”16px” header_line_height=”1.5em” body_font=”Montserrat||||||||” body_font_size=”16px” body_line_height=”1.5em” body_link_text_color=”rgba(206,206,206,0.9)” text_orientation=”center” background_layout=”dark” custom_margin=”|||” custom_padding=”|||” border_radii=”on|10px|10px|10px|10px” locked=”off” background_layout__hover_enabled=”on|desktop”]<\/p>\n 1 (514) 370-3625<\/span><\/a> [\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_contact_form title=”Contactez Fondation de l’Ataxie Charlevoix-Saguenay” _builder_version=”4.8.2″ _module_preset=”default” form_field_background_color=”#FFFFFF” form_field_text_color=”#333333″ form_field_focus_background_color=”rgba(255,255,255,0.75)” title_font=”Montserrat|700|||||||” title_text_align=”center” title_text_color=”#FFFFFF” title_font_size=”44px” captcha_text_color=”RGBA(206,206,206,0.9)” captcha_font_size=”18px” captcha_letter_spacing=”2px” custom_button=”on” button_text_color=”#FFFFFF” button_bg_color=”#52A2EC” button_border_width=”1px” button_border_color=”#FFFFFF” button_border_radius=”50px” button_font=”|700|||||||” custom_css_contact_fields=”border-radius: 5px;” custom_css_text_field=”border-radius: 5px;” custom_css_captcha_field=”border-radius: 5px;”][et_pb_contact_field field_id=”Name” field_title=”Nom” _builder_version=”3.16″ button_text_size__hover_enabled=”off” button_one_text_size__hover_enabled=”off” button_two_text_size__hover_enabled=”off” button_text_color__hover_enabled=”off” button_one_text_color__hover_enabled=”off” button_two_text_color__hover_enabled=”off” button_border_width__hover_enabled=”off” button_one_border_width__hover_enabled=”off” button_two_border_width__hover_enabled=”off” button_border_color__hover_enabled=”off” button_one_border_color__hover_enabled=”off” button_two_border_color__hover_enabled=”off” button_border_radius__hover_enabled=”off” button_one_border_radius__hover_enabled=”off” button_two_border_radius__hover_enabled=”off” button_letter_spacing__hover_enabled=”off” button_one_letter_spacing__hover_enabled=”off” button_two_letter_spacing__hover_enabled=”off” button_bg_color__hover_enabled=”off” button_one_bg_color__hover_enabled=”off” button_two_bg_color__hover_enabled=”off”][\/et_pb_contact_field][et_pb_contact_field field_id=”Email” field_title=”Courriel” field_type=”email” _builder_version=”3.16″ button_text_size__hover_enabled=”off” button_one_text_size__hover_enabled=”off” button_two_text_size__hover_enabled=”off” button_text_color__hover_enabled=”off” button_one_text_color__hover_enabled=”off” button_two_text_color__hover_enabled=”off” button_border_width__hover_enabled=”off” button_one_border_width__hover_enabled=”off” button_two_border_width__hover_enabled=”off” button_border_color__hover_enabled=”off” button_one_border_color__hover_enabled=”off” button_two_border_color__hover_enabled=”off” button_border_radius__hover_enabled=”off” button_one_border_radius__hover_enabled=”off” button_two_border_radius__hover_enabled=”off” button_letter_spacing__hover_enabled=”off” button_one_letter_spacing__hover_enabled=”off” button_two_letter_spacing__hover_enabled=”off” button_bg_color__hover_enabled=”off” button_one_bg_color__hover_enabled=”off” button_two_bg_color__hover_enabled=”off”][\/et_pb_contact_field][et_pb_contact_field field_id=”Message” field_title=”Message” field_type=”text” fullwidth_field=”on” _builder_version=”3.16″ button_text_size__hover_enabled=”off” button_one_text_size__hover_enabled=”off” button_two_text_size__hover_enabled=”off” button_text_color__hover_enabled=”off” button_one_text_color__hover_enabled=”off” button_two_text_color__hover_enabled=”off” button_border_width__hover_enabled=”off” button_one_border_width__hover_enabled=”off” button_two_border_width__hover_enabled=”off” button_border_color__hover_enabled=”off” button_one_border_color__hover_enabled=”off” button_two_border_color__hover_enabled=”off” button_border_radius__hover_enabled=”off” button_one_border_radius__hover_enabled=”off” button_two_border_radius__hover_enabled=”off” button_letter_spacing__hover_enabled=”off” button_one_letter_spacing__hover_enabled=”off” button_two_letter_spacing__hover_enabled=”off” button_bg_color__hover_enabled=”off” button_one_bg_color__hover_enabled=”off” button_two_bg_color__hover_enabled=”off”][\/et_pb_contact_field][\/et_pb_contact_form][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" Foire aux questionsUn 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.En vous inscrivant […]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","inline_featured_image":false,"footnotes":""},"class_list":["post-13179","page","type-page","status-publish","hentry"],"yoast_head":"\n
ataxie@arsacs.com<\/a><\/p>\n