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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\">Costruendo su 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___69d791884b044\" ><a href=\"\/it\/for-participants\/\" class=\"jkit-button-wrapper\">Famiglie HD<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_69d791884c016\" ><a href=\"\" class=\"jkit-button-wrapper\">Imparare<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\">Costruendo su 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\">piattaforma<\/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 come piattaforma<\/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\" \/>In un certo senso, Enroll-HD non \u00e8 cos\u00ec insolito. Come altri studi osservazionali o di \u201cstoria naturale\u201d, monitora i sintomi e i cambiamenti sottostanti causati dalla malattia nel tempo. Le informazioni vengono raccolte ogni anno, dalle stesse persone, per molto tempo. Le informazioni possono essere di grande aiuto nella ricerca di trattamenti perch\u00e9 forniscono misurazioni affidabili di ci\u00f2 che accade nel cervello e nel resto del corpo con la MH. Ed \u00e8 essenziale per testare nuovi farmaci destinati a prevenire o rallentare la progressione della malattia; l\u2019unico modo per sapere se un trattamento funziona davvero \u00e8 avere una registrazione accurata di ci\u00f2 che di solito accade man mano che la malattia progredisce. Successivamente, negli studi clinici, ai volontari pu\u00f2 essere somministrato il farmaco e i risultati possono essere confrontati con il decorso previsto della malattia. Per tutti questi motivi, Enroll-HD \u00e8 molto simile ad altri studi osservazionali su malattie come il Parkinson e l&#039;Alzheimer.<\/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\tIn media, in uno studio clinico, due terzi dei centri non arruolano un numero sufficiente di pazienti.\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>Ma sotto altri aspetti Enroll-HD \u00e8 molto diverso poich\u00e9, a differenza della maggior parte degli studi, combina osservazioni con nuove opportunit\u00e0 per i ricercatori di condurre sottostudi che pongono domande scientifiche specifiche, afferma Bernhard Landwehrmeyer, MD, lo sperimentatore principale di Enroll-HD. \u201cL\u2019idea \u00e8 quella di combinare la raccolta di alcuni set di dati standard con una raccolta di dati mirata basata su ipotesi\u201d, afferma. \"Combinando tutto ci\u00f2 in un'unica piattaforma, si elimina parte del carico dai pazienti e dal centro dello studio e lo si rende molto pi\u00f9 efficiente.\"<\/p><p>Enroll-HD ha anche un obiettivo pratico: rendere pi\u00f9 semplice tutta la ricerca sulla MH, accelerando il processo di ricerca di farmaci e altri approcci che funzionino davvero. Piuttosto che essere limitato all&#039;uso da parte di un gruppo selezionato di ricercatori, \u00e8 progettato come una risorsa comunitaria che rende pi\u00f9 veloce ed efficiente per altri ricercatori realizzare i loro progetti (per ulteriori informazioni su come funzioner\u00e0, leggi &quot;Enroll-HD come risorsa pubblica&quot; ). Questo \u00e8 il motivo per cui si chiama piattaforma: \u00e8 una struttura che supporta altro lavoro.<\/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\tPer ogni nuovo farmaco di successo vengono arruolati 2.094 pazienti in studi medici.\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>Fondamentalmente, stende un tappetino di \u201cbenvenuto\u201d per i ricercatori e le aziende farmaceutiche per studiare la MH, fornendo molti degli ingredienti essenziali per una sperimentazione clinica, come una rete globale di centri di ricerca, un database attentamente mantenuto che tiene traccia della salute delle persone nel tempo, e, cosa pi\u00f9 importante, un database aggiornato e protetto dalla privacy di persone che hanno la MH o la mutazione genetica che potrebbero voler offrirsi volontarie per un nuovo studio. \"\u00c8 possibile individuare il gruppo di persone che potrebbero partecipare ad uno studio o ad una sperimentazione\", afferma Landwehrmeyer, e queste persone possono quindi essere invitate a unirsi dal proprio medico (per ulteriori informazioni su come funziona, leggere \"Come Sar\u00f2 invitato a partecipare a una sperimentazione?\u201c). \"Rendi il lavoro molto pi\u00f9 efficiente.\" \u00c8 una base su cui tutti gli altri ricercatori sulla MH possono costruire.<\/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;ago nel pagliaio<\/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 );\">Trovare un numero sufficiente di persone giuste a cui unirsi \u00e8 la sfida pi\u00f9 grande di qualsiasi studio o sperimentazione clinica. Secondo una stima, il 40% del costo della sperimentazione di nuovi farmaci per tutte le patologie \u00e8 destinato alla ricerca dei partecipanti giusti: circa $1,9 miliardi di dollari all\u2019anno in totale. Arruolare un numero sufficiente di persone richiede generalmente il doppio del tempo previsto e il risultato \u00e8 che l\u201980% di tutti gli studi clinici non terminano in tempo. La difficolt\u00e0 di trovare partecipanti \u201crende le sperimentazioni pi\u00f9 lunghe di quanto dovrebbero essere\u201d, afferma Cristina Sampaio, MD, PhD, direttore clinico di CHDI. \u201cE a volte le sperimentazioni semplicemente falliscono, perch\u00e9 le persone non sono in grado di reclutare i pazienti di cui hanno bisogno\u201d.<\/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\" \/>Disponendo di un database sicuro completo, ben documentato e aggiornato di potenziali volontari (tutti identificati solo da un codice in modo da tutelare la privacy), un'azienda farmaceutica o altri scienziati possono scoprire rapidamente se lo studio che desiderano fare sia o non sia fattibile, se un numero sufficiente di persone con il gene MH che si trovano in una determinata fase della loro malattia si trovino nel posto giusto per prendere parte allo studio. \u201c\u00c8 tutta una questione di tempo\u201d, afferma il presidente di CHDI Robi Blumenstein. \"Ogni volta che qualcuno dice: 'Ci piacerebbe studiare questo tipo di paziente, con questa combinazione di et\u00e0 e ripetizioni CAG [del gene MH],' possiamo consultare il database e avviare lo studio giusto il pi\u00f9 rapidamente possibile. \" L'idea \u00e8 che, poich\u00e9 questa conoscenza rende pi\u00f9 facile per le aziende farmaceutiche avviare gli studi, aiuter\u00e0 a spostare la MH pi\u00f9 in alto nelle loro liste di priorit\u00e0.<\/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\tA causa dei ritardi nel reclutamento dei pazienti, la met\u00e0 degli studi clinici richiede molto pi\u00f9 tempo del previsto\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 agisce come una piattaforma per altri studi in diversi modi. Gran parte della documentazione necessaria per condurre questi progetti aggiuntivi \u00e8 gi\u00e0 in atto perch\u00e9 gli accordi dettagliati vengono stipulati quando Enroll-HD viene avviato in ciascun centro. Il personale del centro \u00e8 ben formato sui modi migliori per misurare i sintomi della MH.<\/p><p>E la storia medica dei potenziali volontari (come si sono sentiti di recente, quali farmaci hanno assunto e la loro storia familiare) \u00e8 gi\u00e0 documentata, con molteplici controlli di qualit\u00e0 per assicurarsi che sia tutto accurato. \"Sfruttare le informazioni gi\u00e0 disponibili consente di risparmiare tempo e denaro\", afferma 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: costo medio per un paziente nella prima fase di una sperimentazione clinica\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>Questa piattaforma di ricerca sar\u00e0 disponibile anche per le persone che studiano altri aspetti della MH. Ad esempio, se i ricercatori vogliono lavorare su modi migliori per misurare i cambiamenti nel controllo motorio e nei movimenti involontari nella MH, sapere quante persone potrebbero offrirsi volontarie li aiuter\u00e0 a pianificare dove e come condurre lo studio e quanto tempo ci vorr\u00e0. &quot;\u00c8 davvero utile quando si pianifica uno studio e ti aiuta a eseguirlo in modo efficiente in termini di tempo&quot;, afferma Michael Orth dell&#039;Universit\u00e0 di Ulm. \u201cPer i ricercatori questo \u00e8 davvero interessante. Ti stai risparmiando un sacco di problemi.&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<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\">\u00c8 come uno smartphone<\/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 suggerisce che un altro modo di pensare allo studio \u00e8 come uno smartphone; proprio come il telefono fornisce l&#039;hardware per il quale i programmatori possono creare app, Enroll-HD fornisce un sistema di base che consente a tutti di lavorare con gli stessi protocolli e procedure di base. Da questo punto di partenza, tutti gli studi che altri ricercatori inventeranno e porteranno avanti potranno essere pensati come le app che i programmatori costruiscono e aggiungono al telefono.<\/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>Proprio come il telefono ispira i programmatori di software a inventare tutti i tipi di app nuove e creative, l&#039;idea \u00e8 che Enroll-HD scatener\u00e0 idee innovative da testare sul trattamento della MH.<\/p><p>Forse una delle cose pi\u00f9 insolite di Enroll-HD, rispetto ad altri studi osservazionali, \u00e8 che \u00e8 progettato anche per migliorare la qualit\u00e0 delle cure. Poich\u00e9 nello studio saranno coinvolte cos\u00ec tante persone gi\u00e0 in trattamento per la MH, e poich\u00e9 i modi di trattare i sintomi della MH (come la terapia fisica o i farmaci per problemi psichiatrici) variano molto da regione a regione, dovrebbe essere possibile confrontare regimi di trattamento in tutto il mondo e identificare quelli migliori. Enroll-HD consente di confrontare attentamente il modo in cui viene gestita la MH in Australia, Argentina e Austria e capire cosa funziona meglio. Tali informazioni possono quindi essere condivise in tutto il mondo. \"L'idea \u00e8 quella di acquisire queste informazioni in modo adeguatamente confidenziale e inserirle in un database in modo che abbiano un'utilit\u00e0 extra\", afferma Blumenstein. \u201cQuindi potrai vedere quali approcci funzionano meglio e condividere le migliori pratiche in tutti i Paesi\u201d.<\/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\tIn media, un farmaco impiega pi\u00f9 di 8 anni per essere testato\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>Poich\u00e9 Enroll-HD \u00e8 uno studio cos\u00ec ampio \u2013 pi\u00f9 grande di qualsiasi altro studio simile per altre malattie neurodegenerative \u2013 che durer\u00e0 a lungo, la speranza \u00e8 che possa anche essere un faro per i giovani ricercatori affinch\u00e9 possano portare il loro talento e la loro energia nella lotta alla MH. Avere uno studio collaborativo cos\u00ec ampio per una malattia relativamente rara \u00e8 unico e crea un&#039;importante risorsa e nuove possibilit\u00e0 di ricerca che incoraggeranno i giovani ricercatori a vedere la MH come un campo promettente in cui possono fare la differenza.<\/p><p>Lo studio crea inoltre una comunit\u00e0 globale permanente di scienziati, operatori sanitari, pazienti e famiglie, afferma Sampaio. &quot;Gli operatori sanitari ricevono formazione e istruzione e vengono resi consapevoli dei bisogni della comunit\u00e0, e allo stesso tempo i pazienti e le famiglie vengono istruiti con maggiore consapevolezza su ci\u00f2 che sta accadendo nella ricerca e perch\u00e9 \u00e8 importante&quot;, afferma. \u201cSi tratta di un processo estremamente positivo\u201d.<\/p><p>Fornendo un insieme di strumenti e obiettivi comuni, lo studio ha il potenziale per unificare la comunit\u00e0 di ricerca sulla MH in tutto il mondo. Avviarlo e mantenerlo richiede un grande sforzo, ma i frutti arriveranno abbastanza rapidamente, prevede Orth. \"Il vero scopo \u00e8 curare le persone, e Enroll-HD ha il potere di servire davvero bene a questo scopo, eliminando la burocrazia e i problemi, con risultati che probabilmente saranno solidi e affidabili\", afferma. \"Questo \u00e8 l'obiettivo generale: vogliamo curare le persone.\"<\/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>Basarsi su Enroll-HD HD Le famiglie imparano a costruire sulla piattaforma Enroll-HD Enroll-HD come piattaforma In un certo senso, Enroll-HD non \u00e8 cos\u00ec insolito. Come altri studi osservazionali o di \u201cstoria naturale\u201d, monitora i sintomi e i cambiamenti sottostanti causati dalla malattia nel tempo. Le informazioni vengono raccolte ogni anno, dalle stesse persone, per molto tempo. L&#039;informazione [\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\/it\/wp-json\/wp\/v2\/pages\/1000","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/comments?post=1000"}],"version-history":[{"count":95,"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/pages\/1000\/revisions"}],"predecessor-version":[{"id":10712,"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/pages\/1000\/revisions\/10712"}],"up":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/pages\/697"}],"wp:attachment":[{"href":"https:\/\/www.enroll-hd.org\/it\/wp-json\/wp\/v2\/media?parent=1000"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}