{"id":853,"date":"2024-04-23T14:52:53","date_gmt":"2024-04-23T12:52:53","guid":{"rendered":"https:\/\/www.uni.lu\/lcsb-fr\/?post_type=research-projects&#038;p=853"},"modified":"2024-05-17T14:16:38","modified_gmt":"2024-05-17T12:16:38","slug":"etude-mypd","status":"publish","type":"research-projects","link":"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/","title":{"rendered":"\u00c9tude \u00ab\u00a0MyPD\u00a0\u00bb &#8211; Concevoir ensemble un journal \u00e9lectronique pour les personnes atteintes de la maladie de Parkinson"},"content":{"rendered":"<div class=\"section py-0 static\">\n<section class=\"py-0 wp-block-unilux-blocks-free-section section\"><div class=\"container xl:max-w-screen-xl\">\n<div class=\"py-0 wp-block-unilux-blocks-navigation-and-research-project-overview  section\">\n<div class=\"wp-block-unilux-blocks-wrapper container xl:max-w-screen-xl\"><div class=\"js-secondary-nav--sticky wp-block-unilux-blocks-secondary-navigation\" id=\"e91ded91-e8d3-4aa6-88a7-450ddb6d038f\">\n    <nav\n        id=\"secondary-navigation\"\n        role=\"navigation\"\n        aria-label=\"Secondary menu\"\n        class=\"secondary-nav\"\n    >\n        <button\n            class=\"secondary-nav__button btn btn-solid--primary w-full\"\n            aria-expanded=\"false\"\n            aria-controls=\"secondary-navigation__list\"\n            title=\"The selected page is Accueil\"\n            type=\"button\"\n        >\n            <span class=\"btn__name mr-auto\">Accueil<\/span>\n            <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--xs\">\n                <use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-down\" \/>\n            <\/svg>\n        <\/button>\n\n        <ul id=\"secondary-navigation__list\" class=\"secondary-nav__list\">\n            <li class=\"secondary-nav__item\">\n    <a\n        href=\"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/\"\n        target=\"\"\n        rel=\"noreferrer noopener\"\n        class=\"secondary-nav__link isactived\"\n        aria-current=\"page\"    >\n        <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--xs\">\n            <use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-right\" \/>\n        <\/svg>\n        <span class=\"secondary-nav__name\">Accueil<\/span>\n    <\/a>\n<\/li>\n<li class=\"secondary-nav__item\">\n    <a\n        href=\"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/a-propos\/\"\n        target=\"\"\n        rel=\"noreferrer noopener\"\n        class=\"secondary-nav__link \"\n            >\n        <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--xs\">\n            <use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-right\" \/>\n        <\/svg>\n        <span class=\"secondary-nav__name\">\u00c0 propos<\/span>\n    <\/a>\n<\/li>\n<li class=\"secondary-nav__item\">\n    <a\n        href=\"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/vivre-avec-parkinson\/\"\n        target=\"\"\n        rel=\"noreferrer noopener\"\n        class=\"secondary-nav__link \"\n            >\n        <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--xs\">\n            <use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-right\" \/>\n        <\/svg>\n        <span class=\"secondary-nav__name\">Patient<\/span>\n    <\/a>\n<\/li>\n<li class=\"secondary-nav__item\">\n    <a\n        href=\"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/aidant-informel\/\"\n        target=\"\"\n        rel=\"noreferrer noopener\"\n        class=\"secondary-nav__link \"\n            >\n        <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--xs\">\n            <use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-right\" \/>\n        <\/svg>\n        <span class=\"secondary-nav__name\">Aidant informel<\/span>\n    <\/a>\n<\/li>\n<li class=\"secondary-nav__item\">\n    <a\n        href=\"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/contact\/\"\n        target=\"\"\n        rel=\"noreferrer noopener\"\n        class=\"secondary-nav__link \"\n            >\n        <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--xs\">\n            <use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-right\" \/>\n        <\/svg>\n        <span class=\"secondary-nav__name\">Contact<\/span>\n    <\/a>\n<\/li>\n        <\/ul>\n    <\/nav>\n<\/div>\n<\/div>\n\n\n<\/div>\n<\/div><\/section>\n\n\n\n<section class=\"wp-block-unilux-blocks-free-section section\"><div class=\"container xl:max-w-screen-xl\">\n<h2 class=\"has-text-align-left wp-block-unilux-blocks-heading\"        id=\"a-propos-de-letude\"\n    >\n<strong>\u00c0 propos de l&rsquo;\u00e9tude<\/strong><\/h2>\n\n\n\n<p>L&rsquo;\u00e9tude \u00ab&nbsp;MyPD&nbsp;\u00bb vise \u00e0 comprendre comment les personnes atteintes de la maladie de Parkinson per\u00e7oivent leur maladie, comment elles g\u00e8rent leur sant\u00e9 au quotidien et dans quelle mesure elles utilisent les technologies r\u00e9centes (ordinateurs, t\u00e9l\u00e9phones mobiles, application, etc.) dans ce cadre.<\/p>\n\n\n\n<p>Si une bonne prise en charge de la maladie de Parkinson n\u00e9cessite la contribution de nombreux professionnels de sant\u00e9 (m\u00e9decins, th\u00e9rapeutes, infirmi\u00e8res) et le soutien des proches, elle passe aussi par la participation active des personnes touch\u00e9es. C\u2019est sur ce dernier point que les nouvelles technologies num\u00e9riques peuvent se r\u00e9v\u00e9ler tr\u00e8s utiles.<\/p>\n\n\n\n<p>C&rsquo;est pourquoi, dans le cadre de l\u2019\u00e9tude \u00ab&nbsp;MyPD&nbsp;\u00bb, des chercheurs sont ainsi en train de d\u00e9velopper une nouvelle application pour favoriser l\u2019implication des patients dans leur parcours de soin. Ce journal \u00e9lectronique (eDiary) leur permettra de s&rsquo;informer sur la maladie, d\u2019y consigner des informations sur leur sant\u00e9 et de partager facilement ces informations avec leur \u00e9quipe soignante.<\/p>\n\n\n\n<p>La premi\u00e8re \u00e9tape de cette \u00e9tude est une enqu\u00eate en ligne. Le questionnaire prend environ 30 minutes et est disponible en anglais, allemand et fran\u00e7ais. Pour cette enqu\u00eate en ligne, nous recherchons :<\/p>\n\n\n\n<ol type=\"1\" class=\"ulux-list\">\n<li class=\"ulux-list-item\">Des personnes vivant avec la maladie de Parkinson<\/li>\n\n\n\n<li class=\"ulux-list-item\">Des aidants informels qui accompagnent un patient dans sa vie quotidienne, comme les membres de la famille, le ou la partenaire, les amis, etc.<\/li>\n<\/ol>\n\n\n\n<p>En participant \u00e0 cette \u00e9tude, vous nous aiderez \u00e0 :<\/p>\n\n\n\n<ul class=\"ulux-list\">\n<li class=\"ulux-list-item\">Mieux comprendre les habitudes des personnes atteintes de la maladie de Parkinson, les strat\u00e9gies qu\u2019elles utilisent pour g\u00e9rer la maladie au quotidien et le type de soutien offert par les proches.<\/li>\n\n\n\n<li class=\"ulux-list-item\">Approfondir nos connaissances sur les technologies actuellement utilis\u00e9es par les patients afin de nous aider \u00e0 concevoir une application eDiary qui r\u00e9ponde aux besoins des utilisateurs et qui fasse une r\u00e9elle diff\u00e9rence dans leur vie quotidienne.<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-unilux-blocks-quick-link-highlight quick-link-list\">\n<li class=\"wp-block-unilux-blocks-quick-link-highlight-item\">\n    <a\n                    href=\"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/vivre-avec-parkinson\/\"\n                    class=\"quick-link\"\n            target=\"\"\n    >\n            <span class=\"quick-link__container\">\n                <span class=\"quick-link__body\">\n                    <span class=\"quick-link__number\">\n                        \u00cates-vous une personne atteinte de la maladie de Parkinson ?                    <\/span>\n                    <span class=\"quick-link__title\">\n                        En savoir plus et lancer le questionnaire                    <\/span>\n                    <span class=\"quick-link__action\">\n                                            <\/span>\n                <\/span>\n                <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--arrow-right \"><use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-right\"><\/use><\/svg>            <\/span>\n    <\/a>\n<\/li>\n\n\n\n<li class=\"wp-block-unilux-blocks-quick-link-highlight-item\">\n    <a\n                    href=\"https:\/\/www.uni.lu\/lcsb-fr\/research-projects\/etude-mypd\/aidant-informel\/\"\n                    class=\"quick-link\"\n            target=\"\"\n    >\n            <span class=\"quick-link__container\">\n                <span class=\"quick-link__body\">\n                    <span class=\"quick-link__number\">\n                        \u00cates-vous le ou la partenaire, un membre de la famille ou un ami qui soutient une personne atteinte de la maladie de Parkinson ?                    <\/span>\n                    <span class=\"quick-link__title\">\n                        En savoir plus et lancer le questionnaire                    <\/span>\n                    <span class=\"quick-link__action\">\n                                            <\/span>\n                <\/span>\n                <svg aria-hidden=\"true\" focusable=\"false\" class=\"icon icon-outline icon--arrow-right \"><use xlink:href=\"https:\/\/www.uni.lu\/wp-content\/themes\/unilux-theme\/assets\/images\/icons\/icons-outline.svg#icon--arrow-right\"><\/use><\/svg>            <\/span>\n    <\/a>\n<\/li>\n<\/ul>\n\n\n\n<p>L&rsquo;\u00e9tude \u00ab&nbsp;MyPD&nbsp;\u00bb est organis\u00e9e dans le cadre du <a href=\"https:\/\/www.parkinson.lu\/fr\/\" target=\"_blank\" rel=\"noreferrer noopener\">National Centre of Excellence on Parkinson\u2019s Disease (NCER-PD)<\/a>. Elle est financ\u00e9e par le Luxembourg National Research Fund (FNR) et a re\u00e7u un accord \u00e9thique du Comit\u00e9 national d&rsquo;\u00e9thique de la recherche (CNER).<\/p>\n\n\n\n<h2 class=\"has-text-align-left wp-block-unilux-blocks-heading\"        id=\"project-team\"\n    >\nProject team<\/h2>\n\n\n\n<ul class=\"ulux-list\">\n<li class=\"ulux-list-item\">Jochen KLUCKEN, PI<\/li>\n\n\n\n<li class=\"ulux-list-item\">Marijus GIRAITIS, clinician-scientist <\/li>\n<\/ul>\n\n\n\n<p>Bio-medical informatics and technical support by Soumyabrata Ghosh, Valentin Grou\u00e8s, Fran\u00e7ois Ancien, Venkata Pardhasaradhi Satagopam from <a href=\"https:\/\/www.uni.lu\/lcsb-en\/research-groups\/bioinformatics-core\/\">Bioinformatics Core<\/a><\/p>\n<\/div><\/section>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":56,"featured_media":852,"parent":0,"menu_order":0,"template":"","meta":{"featured_image_focal_point":[],"show_featured_caption":false,"ulux_newsletter_groups":"","uluxPostTitle":"","uluxPrePostTitle":"","_trash_the_other_posts":false,"_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"rpp_rp_identifier":"848","rpp_taxonomies_in_sync":true},"research-project-status":[595],"research-project-type":[],"field-of-interest":[280,289],"organisation":[535,525],"authorship":[56],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v22.3 (Yoast SEO v22.3) - 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