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.elementor-element.elementor-element-5321ade .jeg-elementor-kit.jkit-button.icon-position-before .jkit-button-wrapper svg{margin-right:10px;}.elementor-1000 .elementor-element.elementor-element-5321ade .jeg-elementor-kit.jkit-button.icon-position-after .jkit-button-wrapper i, .elementor-1000 .elementor-element.elementor-element-5321ade .jeg-elementor-kit.jkit-button.icon-position-after .jkit-button-wrapper svg{margin-left:10px;}.elementor-1000 .elementor-element.elementor-element-36f4b55 .elementor-heading-title{font-size:var( --e-global-typography-6cb29b0-font-size );line-height:var( --e-global-typography-6cb29b0-line-height );letter-spacing:var( --e-global-typography-6cb29b0-letter-spacing );word-spacing:var( --e-global-typography-6cb29b0-word-spacing );}.elementor-1000 .elementor-element.elementor-element-36f4b55 > .elementor-widget-container{margin:0px 0px 0px 0px;}.elementor-1000 .elementor-element.elementor-element-ec4c20b .elementor-heading-title{font-size:var( --e-global-typography-45ff652-font-size );line-height:var( --e-global-typography-45ff652-line-height );letter-spacing:var( --e-global-typography-45ff652-letter-spacing );word-spacing:var( --e-global-typography-45ff652-word-spacing );}.elementor-1000 .elementor-element.elementor-element-f384a7a .elementor-heading-title{font-size:var( --e-global-typography-secondary-font-size );}.elementor-1000 .elementor-element.elementor-element-c57f7cf{font-size:var( --e-global-typography-text-font-size );}.elementor-1000 .elementor-element.elementor-element-e08c1f0 .elementor-blockquote__content{font-size:var( --e-global-typography-1026598-font-size );line-height:var( --e-global-typography-1026598-line-height );letter-spacing:var( --e-global-typography-1026598-letter-spacing );word-spacing:var( --e-global-typography-1026598-word-spacing );}.elementor-1000 .elementor-element.elementor-element-e08c1f0 .elementor-blockquote__author{font-size:var( --e-global-typography-primary-font-size 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.elementor-element.elementor-element-7fe3554 .elementor-blockquote__content{font-size:var( --e-global-typography-1026598-font-size );line-height:var( --e-global-typography-1026598-line-height );letter-spacing:var( --e-global-typography-1026598-letter-spacing );word-spacing:var( --e-global-typography-1026598-word-spacing );}.elementor-1000 .elementor-element.elementor-element-7fe3554 .elementor-blockquote__author{font-size:var( --e-global-typography-primary-font-size );}.elementor-1000 .elementor-element.elementor-element-601597f .elementor-blockquote__content{font-size:var( --e-global-typography-1026598-font-size );line-height:var( --e-global-typography-1026598-line-height );letter-spacing:var( --e-global-typography-1026598-letter-spacing );word-spacing:var( --e-global-typography-1026598-word-spacing );}.elementor-1000 .elementor-element.elementor-element-601597f .elementor-blockquote__author{font-size:var( --e-global-typography-primary-font-size );}}@media(min-width:768px){.elementor-1000 .elementor-element.elementor-element-83560d9{width:100%;}}@media(max-width:1024px) and (min-width:768px){.elementor-1000 .elementor-element.elementor-element-83560d9{width:100%;}}<\/style>\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"1000\" class=\"elementor elementor-1000\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-15bef37 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"15bef37\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t\t<div class=\"elementor-background-overlay\"><\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-83560d9\" data-id=\"83560d9\" data-element_type=\"column\" data-e-type=\"column\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t<div class=\"elementor-background-overlay\"><\/div>\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-68df01f elementor-widget elementor-widget-heading\" data-id=\"68df01f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">En s'appuyant sur Enroll-HD<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c860204 elementor-widget__width-auto elementor-widget elementor-widget-jkit_button\" data-id=\"c860204\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"jkit_button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div  class=\"jeg-elementor-kit jkit-button  icon-position-after jeg_module___69d595bd294e7\" ><a href=\"\/fr\/for-participants\/\" class=\"jkit-button-wrapper\">Familles MH<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/i><\/a><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5321ade elementor-widget__width-auto elementor-widget elementor-widget-jkit_button\" data-id=\"5321ade\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"jkit_button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div  class=\"jeg-elementor-kit jkit-button  icon-position-after jeg_module__1_69d595bd2a460\" ><a href=\"\" class=\"jkit-button-wrapper\">Apprendre<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/i><\/a><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-36f4b55 elementor-widget__width-auto elementor-widget elementor-widget-heading\" data-id=\"36f4b55\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">En s'appuyant sur Enroll-HD<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-427356d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"427356d\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-fd5de22\" data-id=\"fd5de22\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-ec4c20b elementor-widget elementor-widget-heading\" data-id=\"ec4c20b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h5 class=\"elementor-heading-title elementor-size-default\">Plate-forme<\/h5>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f384a7a elementor-widget elementor-widget-heading\" data-id=\"f384a7a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Enroll-HD comme plateforme<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ae715fc elementor-widget elementor-widget-spacer\" data-id=\"ae715fc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c57f7cf elementor-widget elementor-widget-text-editor\" data-id=\"c57f7cf\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><img fetchpriority=\"high\" decoding=\"async\" class=\"size-medium wp-image-1002 alignleft\" src=\"http:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/Enroll-Phone-Tablet-Monitor-300x225.png\" alt=\"\" width=\"300\" height=\"225\" srcset=\"https:\/\/www.enroll-hd.org\/wp-content\/uploads\/2021\/05\/Enroll-Phone-Tablet-Monitor-300x225.png 300w, https:\/\/www.enroll-hd.org\/wp-content\/uploads\/2021\/05\/Enroll-Phone-Tablet-Monitor.png 558w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>D\u2019une certaine mani\u00e8re, l'\u00e9tude Enroll-HD n\u2019est pas si inhabituelle. Comme d\u2019autres \u00e9tudes observationnelles ou \u00ab d\u2019histoire naturelle \u00bb, elle surveille les sympt\u00f4mes et les changements sous-jacents provoqu\u00e9s par la maladie au fil du temps. Les informations sont collect\u00e9es chaque ann\u00e9e, aupr\u00e8s des m\u00eames personnes, depuis longtemps. Ces informations peuvent s\u2019av\u00e9rer d\u2019une grande aide dans la recherche de traitements, car elles fournissent des mesures fiables de ce qui se passe dans le cerveau et dans le reste du corps atteint de MH. Et c'est essentiel pour tester de nouveaux m\u00e9dicaments destin\u00e9s \u00e0 pr\u00e9venir ou \u00e0 ralentir la progression de la maladie ; la seule fa\u00e7on de savoir si un traitement fonctionne r\u00e9ellement est d\u2019avoir un enregistrement pr\u00e9cis de ce qui se passe habituellement \u00e0 mesure que la maladie progresse. Ensuite, lors d'essais cliniques, des volontaires peuvent recevoir le m\u00e9dicament et les r\u00e9sultats compar\u00e9s \u00e0 l'\u00e9volution pr\u00e9vue de la maladie. Pour toutes ces raisons, Enroll-HD ressemble beaucoup \u00e0 d\u2019autres \u00e9tudes observationnelles sur des maladies comme la maladie de Parkinson et la maladie d\u2019Alzheimer.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6443947 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6443947\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-05e6c1f\" data-id=\"05e6c1f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-e08c1f0 elementor-blockquote--skin-quotation elementor-widget elementor-widget-blockquote\" data-id=\"e08c1f0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"blockquote.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<blockquote class=\"elementor-blockquote\">\n\t\t\t<p class=\"elementor-blockquote__content\">\n\t\t\t\tDans une \u00e9tude moyenne sur les m\u00e9dicaments, les deux tiers des sites ne recrutent pas suffisamment de patients.\t\t\t<\/p>\n\t\t\t\t\t<\/blockquote>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-32b3bfa elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"32b3bfa\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-e559b86\" data-id=\"e559b86\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-f32ffa4 elementor-widget elementor-widget-text-editor\" data-id=\"f32ffa4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Mais \u00e0 d'autres \u00e9gards, Enroll-HD est tr\u00e8s diff\u00e9rente puisque, contrairement \u00e0 la plupart des \u00e9tudes, elle combine des observations avec de nouvelles opportunit\u00e9s permettant aux chercheurs de mener des sous-\u00e9tudes posant des questions scientifiques sp\u00e9cifiques, explique Bernhard Landwehrmeyer, MD, chercheur principal du Enroll-HD. \u00ab L\u2019id\u00e9e est de combiner la collecte de certains ensembles de donn\u00e9es standards avec une collecte de donn\u00e9es cibl\u00e9e fond\u00e9e sur des hypoth\u00e8ses \u00bb, explique-t-il. \"En combinant cela sur une seule plateforme, vous all\u00e9gez une partie du fardeau des patients et du site d'\u00e9tude et vous le rendez beaucoup plus efficace.\"<\/p><p>Enroll-HD a \u00e9galement un objectif pratique : faciliter toutes les recherches sur la MH, en acc\u00e9l\u00e9rant le processus de recherche de m\u00e9dicaments et d&#039;autres approches r\u00e9ellement efficaces. Plut\u00f4t que d&#039;\u00eatre limit\u00e9 \u00e0 un groupe s\u00e9lectionn\u00e9 de chercheurs, il est con\u00e7u comme une ressource communautaire qui permet aux autres chercheurs de r\u00e9aliser leurs projets plus rapidement et plus efficacement (pour en savoir plus sur la fa\u00e7on dont cela fonctionnera, lisez \u00ab\u00a0Enroll-HD en tant que ressource publique\u00a0\u00bb ). C&#039;est pourquoi on l&#039;appelle une plateforme : c&#039;est une structure qui soutient d&#039;autres travaux.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-282519d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"282519d\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-6a76e71\" data-id=\"6a76e71\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-c70d930 elementor-blockquote--skin-quotation elementor-blockquote--align-left elementor-widget elementor-widget-blockquote\" data-id=\"c70d930\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"blockquote.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<blockquote class=\"elementor-blockquote\">\n\t\t\t<p class=\"elementor-blockquote__content\">\n\t\t\t\tPour chaque nouveau m\u00e9dicament mis sur le march\u00e9, 2 094 patients ont \u00e9t\u00e9 inclus dans des \u00e9tudes m\u00e9dicales.\t\t\t<\/p>\n\t\t\t\t\t<\/blockquote>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-1b1e25d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"1b1e25d\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-4af81ac\" data-id=\"4af81ac\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-a8be0df elementor-widget elementor-widget-text-editor\" data-id=\"a8be0df\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Fondamentalement, elle repr\u00e9sente un \u00abtapis de bienvenue \u00bb pour les chercheurs et les soci\u00e9t\u00e9s pharmaceutiques d\u00e9sireux d'\u00e9tudier la MH, en fournissant de nombreux ingr\u00e9dients essentiels pour un essai clinique, comme un r\u00e9seau mondial de sites de recherche, une base de donn\u00e9es soigneusement entretenue qui suit l'\u00e9tat de sant\u00e9 des personnes au fil du temps, et, plus important encore, une base de donn\u00e9es \u00e0 jour et prot\u00e9g\u00e9e sur la confidentialit\u00e9 des personnes atteintes de MH ou de mutation g\u00e9n\u00e9tique qui pourraient vouloir se porter volontaires pour une nouvelle \u00e9tude. \"Vous pouvez vous concentrer sur le groupe de personnes susceptibles d'\u00eatre \u00e9ligibles \u00e0 une \u00e9tude ou \u00e0 un essai\", explique Landwehrmeyer, et ces personnes peuvent ensuite \u00eatre invit\u00e9es \u00e0 y participer par leur propre m\u00e9decin (pour en savoir plus sur le fonctionnement, lisez \"Comment Serai-je invit\u00e9 \u00e0 participer \u00e0 un essai\u00a0?\u00a0\u00bb). \"Vous rendez le travail beaucoup plus efficace.\" C'est une base sur laquelle tous les autres chercheurs MH peuvent s'appuyer.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-44e385b elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"44e385b\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-921526a\" data-id=\"921526a\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-0e497db elementor-widget elementor-widget-heading\" data-id=\"0e497db\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">L&#039;aiguille dans la botte de foin<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-9d2a8e5 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"9d2a8e5\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-1f14cb3\" data-id=\"1f14cb3\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-84d25a0 elementor-widget elementor-widget-text-editor\" data-id=\"84d25a0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span style=\"color: var( --e-global-color-text ); font-family: var( --e-global-typography-primary-font-family ), Sans-serif; font-size: var( --e-global-typography-primary-font-size ); font-weight: var( --e-global-typography-primary-font-weight );\">Trouver suffisamment de bonnes personnes pour nous rejoindre est le plus grand d\u00e9fi de toute \u00e9tude ou essai clinique. Selon une estimation, 40 % du co\u00fbt des tests de nouveaux m\u00e9dicaments pour toutes les pathologies est consacr\u00e9 \u00e0 la recherche des bons participants, soit environ 1,9 milliard de dollars par an au total. Recruter suffisamment de personnes n\u00e9cessite g\u00e9n\u00e9ralement deux fois plus de temps que pr\u00e9vu, et le r\u00e9sultat est que 80 % de tous les essais cliniques ne se terminent pas \u00e0 temps. La difficult\u00e9 de trouver des participants \u00ab rend les essais plus longs qu&#039;ils ne devraient l&#039;\u00eatre \u00bb, explique Cristina Sampaio, MD, PhD, directrice clinique du CHDI. \u00ab Et parfois, les essais \u00e9chouent, parce que les gens ne sont pas en mesure de recruter les patients dont ils ont besoin. \u00bb<\/span><\/p><p><img decoding=\"async\" class=\"size-medium wp-image-1003 alignleft\" src=\"http:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/EHD_5874-1024x680-1-300x199.jpg\" alt=\"\" width=\"300\" height=\"199\" srcset=\"https:\/\/www.enroll-hd.org\/wp-content\/uploads\/2021\/05\/EHD_5874-1024x680-1-300x199.jpg 300w, https:\/\/www.enroll-hd.org\/wp-content\/uploads\/2021\/05\/EHD_5874-1024x680-1-768x510.jpg 768w, https:\/\/www.enroll-hd.org\/wp-content\/uploads\/2021\/05\/EHD_5874-1024x680-1.jpg 1024w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>En disposant d&#039;une base de donn\u00e9es s\u00e9curis\u00e9e compl\u00e8te, bien document\u00e9e et \u00e0 jour de volontaires potentiels (tous identifi\u00e9s uniquement par un code afin que la confidentialit\u00e9 soit prot\u00e9g\u00e9e), une soci\u00e9t\u00e9 pharmaceutique ou d&#039;autres scientifiques peuvent savoir rapidement si l&#039;\u00e9tude qu&#039;ils souhaitent ou non est m\u00eame r\u00e9alisable \u2013 si suffisamment de personnes porteuses du g\u00e8ne MH et se trouvant au stade appropri\u00e9 de leur maladie se trouvent au bon endroit pour participer \u00e0 l\u2019\u00e9tude. \u00abIl \u00e9tait temps\u00bb, d\u00e9clare Robi Blumenstein, pr\u00e9sident du CHDI. \u00ab Chaque fois que quelqu&#039;un dit : \u00ab Nous aimerions \u00e9tudier ce type de patient, avec cette combinaison d&#039;\u00e2ge et de r\u00e9p\u00e9titions CAG du [g\u00e8ne HD] \u00bb, nous pouvons consulter la base de donn\u00e9es et mettre en place la bonne \u00e9tude le plus rapidement possible. \u00bb L\u2019id\u00e9e est que, parce que ces connaissances permettent aux soci\u00e9t\u00e9s pharmaceutiques de lancer plus facilement des \u00e9tudes, elles contribueront \u00e0 placer la MH plus haut dans leurs listes de priorit\u00e9s.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6fbb587 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6fbb587\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-e7017ce\" data-id=\"e7017ce\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-15a6633 elementor-blockquote--skin-quotation elementor-widget elementor-widget-blockquote\" data-id=\"15a6633\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"blockquote.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<blockquote class=\"elementor-blockquote\">\n\t\t\t<p class=\"elementor-blockquote__content\">\n\t\t\t\tEn raison des retards dans le recrutement des patients, la moiti\u00e9 des essais cliniques prennent beaucoup plus de temps que pr\u00e9vu\t\t\t<\/p>\n\t\t\t\t\t<\/blockquote>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-15b03f3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"15b03f3\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-ab9325f\" data-id=\"ab9325f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-cc4574e elementor-widget elementor-widget-text-editor\" data-id=\"cc4574e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Enroll-HD agit comme une plateforme pour d\u2019autres \u00e9tudes par d\u2019autres moyens. Une grande partie de la paperasse n\u00e9cessaire \u00e0 la r\u00e9alisation de ces projets suppl\u00e9mentaires est d\u00e9j\u00e0 en place car des accords d\u00e9taill\u00e9s sont conclus lors du lancement du Enroll-HD sur chaque site. Le personnel du site est bien form\u00e9 sur les meilleures fa\u00e7ons de mesurer les sympt\u00f4mes de la MH.<\/p><p>Et les ant\u00e9c\u00e9dents m\u00e9dicaux des volontaires potentiels \u2013 leur \u00e9tat de sant\u00e9 r\u00e9cent, les m\u00e9dicaments qu&#039;ils ont pris, ainsi que leurs ant\u00e9c\u00e9dents familiaux \u2013 sont d\u00e9j\u00e0 document\u00e9s, avec de multiples contr\u00f4les de qualit\u00e9 pour s&#039;assurer que tout est exact. \u00ab\u00a0Cela permet d&#039;\u00e9conomiser du temps et de l&#039;argent en tirant parti des informations d\u00e9j\u00e0 disponibles\u00a0\u00bb, explique Landwehrmeyer.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-47fb3b3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"47fb3b3\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-9b0713e\" data-id=\"9b0713e\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7fe3554 elementor-blockquote--skin-quotation elementor-widget elementor-widget-blockquote\" data-id=\"7fe3554\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"blockquote.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<blockquote class=\"elementor-blockquote\">\n\t\t\t<p class=\"elementor-blockquote__content\">\n\t\t\t\t$20 000 : Co\u00fbt moyen pour un patient en premi\u00e8re phase d&#039;un essai clinique\t\t\t<\/p>\n\t\t\t\t\t<\/blockquote>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2e2cfeb elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2e2cfeb\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-3355c22\" data-id=\"3355c22\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-ce43bfa elementor-widget elementor-widget-text-editor\" data-id=\"ce43bfa\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Cette plateforme de recherche sera \u00e9galement accessible aux personnes \u00e9tudiant d\u2019autres aspects de la MH. Par exemple, si les chercheurs souhaitent travailler sur de meilleures fa\u00e7ons de mesurer les changements dans le contr\u00f4le moteur et les mouvements involontaires en cas de MH, savoir combien de personnes pourraient se porter volontaires les aidera \u00e0 planifier o\u00f9 et comment r\u00e9aliser l&#039;\u00e9tude, ainsi que combien de temps cela prendra. &quot;Cela aide vraiment lors de la planification d&#039;une \u00e9tude et vous aide \u00e0 r\u00e9aliser l&#039;\u00e9tude de mani\u00e8re efficace&quot;, explique Michael Orth de l&#039;Universit\u00e9 d&#039;Ulm. \u00ab Pour les chercheurs, c\u2019est vraiment int\u00e9ressant. Vous vous \u00e9pargnez bien des tracas.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-f2f6ec2 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"f2f6ec2\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-c6fb38b\" data-id=\"c6fb38b\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7329ac8 elementor-widget elementor-widget-heading\" data-id=\"7329ac8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">C&#039;est comme un t\u00e9l\u00e9phone intelligent<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-601c9e0 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"601c9e0\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-e7b7264\" data-id=\"e7b7264\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-1783fb2 elementor-widget elementor-widget-text-editor\" data-id=\"1783fb2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Sampaio sugg\u00e8re qu&#039;une autre fa\u00e7on de penser l&#039;\u00e9tude est comme un smartphone\u00a0; tout comme le t\u00e9l\u00e9phone fournit du mat\u00e9riel pour lequel les programmeurs peuvent cr\u00e9er des applications, Enroll-HD fournit un syst\u00e8me de base qui permet \u00e0 tout le monde de travailler avec les m\u00eames protocoles et proc\u00e9dures de base. \u00c0 partir de l\u00e0, toutes les \u00e9tudes que d\u2019autres chercheurs inventeront et r\u00e9aliseront peuvent \u00eatre consid\u00e9r\u00e9es comme les applications que les programmeurs cr\u00e9ent et ajoutent au t\u00e9l\u00e9phone.<\/p><p><img decoding=\"async\" class=\"size-full wp-image-1004 alignleft\" src=\"http:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/Enroll-phone.png\" alt=\"\" width=\"145\" height=\"226\" \/><\/p><p>Tout comme le t\u00e9l\u00e9phone incite les programmeurs de logiciels \u00e0 cr\u00e9er toutes sortes d&#039;applications nouvelles et cr\u00e9atives, l&#039;id\u00e9e est que Enroll-HD suscitera des id\u00e9es innovantes \u00e0 tester sur le traitement de la MH.<\/p><p>L\u2019un des aspects les plus inhabituels du Enroll-HD, par rapport \u00e0 d\u2019autres \u00e9tudes observationnelles, est peut-\u00eatre qu\u2019il est \u00e9galement con\u00e7u pour am\u00e9liorer la qualit\u00e9 des soins. \u00c9tant donn\u00e9 qu'un grand nombre de personnes d\u00e9j\u00e0 trait\u00e9es pour la MH seront impliqu\u00e9es dans l'\u00e9tude et que les m\u00e9thodes de traitement des sympt\u00f4mes de la MH (telles que la physioth\u00e9rapie ou les m\u00e9dicaments pour les probl\u00e8mes psychiatriques) varient consid\u00e9rablement d'une r\u00e9gion \u00e0 l'autre, il devrait \u00eatre possible de comparer les sch\u00e9mas th\u00e9rapeutiques \u00e0 travers le monde et identifier les meilleurs. Enroll-HD permet de comparer soigneusement la fa\u00e7on dont la HD est g\u00e9r\u00e9e en Australie, en Argentine et en Autriche, et de d\u00e9terminer ce qui fonctionne le mieux. Ces informations peuvent ensuite \u00eatre partag\u00e9es dans le monde entier. \u00ab L'id\u00e9e est de capturer ces informations de mani\u00e8re suffisamment confidentielle et de les mettre dans une base de donn\u00e9es afin qu'elles aient une utilit\u00e9 suppl\u00e9mentaire \u00bb, explique Blumenstein. \u00ab\u00a0Vous pourrez alors voir quelles approches fonctionnent le mieux et partager les meilleures pratiques dans toutes les r\u00e9gions.\u00a0\u00bb<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-7c61528 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"7c61528\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-e7ee2ad\" data-id=\"e7ee2ad\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-601597f elementor-blockquote--skin-quotation elementor-widget elementor-widget-blockquote\" data-id=\"601597f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"blockquote.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<blockquote class=\"elementor-blockquote\">\n\t\t\t<p class=\"elementor-blockquote__content\">\n\t\t\t\tIl faut en moyenne plus de 8 ans pour tester un m\u00e9dicament\t\t\t<\/p>\n\t\t\t\t\t<\/blockquote>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-37a1473 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"37a1473\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-b5d9ed4\" data-id=\"b5d9ed4\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-2da3bb5 elementor-widget elementor-widget-text-editor\" data-id=\"2da3bb5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Parce que Enroll-HD est une \u00e9tude d\u2019une telle envergure \u2013 plus importante que toute autre \u00e9tude similaire sur d\u2019autres maladies neurod\u00e9g\u00e9n\u00e9ratives \u2013 et qu\u2019elle durera longtemps, on esp\u00e8re qu\u2019elle sera \u00e9galement un phare pour que les jeunes chercheurs mettent leurs talents et leur \u00e9nergie \u00e0 lutter contre la MH. Avoir une \u00e9tude collaborative d\u2019une telle envergure sur une maladie relativement rare est unique et cr\u00e9e une ressource importante et de nouvelles possibilit\u00e9s de recherche qui encourageront les jeunes chercheurs \u00e0 consid\u00e9rer la MH comme un domaine prometteur dans lequel ils peuvent faire la diff\u00e9rence.<\/p><p>L&#039;\u00e9tude cr\u00e9e \u00e9galement une communaut\u00e9 mondiale permanente de scientifiques, de professionnels de la sant\u00e9, de patients et de familles, explique Sampaio. \u00ab Les professionnels de la sant\u00e9 re\u00e7oivent une formation et une \u00e9ducation et sont sensibilis\u00e9s aux besoins de la communaut\u00e9, et simultan\u00e9ment les patients et les familles sont mieux inform\u00e9s sur ce qui se passe dans la recherche et pourquoi elle est importante \u00bb, dit-elle. &quot;C&#039;est un processus extr\u00eamement positif.&quot;<\/p><p>En fournissant un ensemble commun d&#039;outils et d&#039;objectifs communs, l&#039;\u00e9tude a le potentiel d&#039;unifier la communaut\u00e9 mondiale de la recherche sur la MH. Le lancer et le maintenir repr\u00e9sente un gros effort, mais les r\u00e9compenses viendront assez rapidement, pr\u00e9dit Orth. \u00ab Le v\u00e9ritable objectif est de traiter les gens, et le Enroll-HD a le pouvoir de tr\u00e8s bien remplir cet objectif, en \u00e9liminant les formalit\u00e9s administratives et les tracas, avec des r\u00e9sultats susceptibles d&#039;\u00eatre robustes et fiables \u00bb, dit-il. &quot;C&#039;est l&#039;objectif global : nous voulons soigner les gens.&quot;<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>S&#039;appuyer sur Enroll-HD HD Les familles apprennent S&#039;appuyer sur la plateforme Enroll-HD Enroll-HD en tant que plateforme D&#039;une certaine mani\u00e8re, Enroll-HD n&#039;est pas si inhabituel. Comme d\u2019autres \u00e9tudes observationnelles ou \u00ab d\u2019histoire naturelle \u00bb, elle surveille les sympt\u00f4mes et les changements sous-jacents provoqu\u00e9s par la maladie au fil du temps. Les informations sont collect\u00e9es chaque ann\u00e9e, aupr\u00e8s des m\u00eames personnes, depuis longtemps. L&#039;information [\u2026]<\/p>","protected":false},"author":1,"featured_media":0,"parent":697,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-1000","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/pages\/1000","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/comments?post=1000"}],"version-history":[{"count":95,"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/pages\/1000\/revisions"}],"predecessor-version":[{"id":10712,"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/pages\/1000\/revisions\/10712"}],"up":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/pages\/697"}],"wp:attachment":[{"href":"https:\/\/www.enroll-hd.org\/fr\/wp-json\/wp\/v2\/media?parent=1000"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}