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--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\">Building on 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___69ddef999b454\" ><a href=\"\/for-participants\/\" class=\"jkit-button-wrapper\">HD Families<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_69ddef999c4bd\" ><a href=\"\" class=\"jkit-button-wrapper\">Learn<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\">Building on 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\">Platform<\/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 as a platform<\/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:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/Enroll-Phone-Tablet-Monitor-300x225.png 300w, https:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/Enroll-Phone-Tablet-Monitor.png 558w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>In some ways, Enroll-HD is not so unusual. Like other observational or \u201cnatural history\u201d studies, it monitors symptoms and underlying changes caused by disease over time. Information is collected every year, from the same people, for a long time. The information can be a major help in the search for treatments because it provides reliable measurements of what is happening inside the brain and rest of the body with HD. And it\u2019s essential for testing new drugs that are intended to prevent or slow the progression disease; the only way to tell if a treatment is really working is to have an accurate record of what usually happens as the disease progresses. Then in clinical trials volunteers can be given the drug and the results compared with the predicted course of disease. For all these reasons, Enroll-HD is a lot like other observational studies of diseases like Parkinson\u2019s and Alzheimer\u2019s.<\/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 the average drug study, two-thirds of the sites don\u2019t enroll enough 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>But in other ways Enroll-HD is very different since, unlike most studies, it combines observations with new opportunities for researchers to conduct sub-studies that ask specific scientific questions, says Bernhard Landwehrmeyer, MD, the principal investigator for Enroll-HD. \u201cThe idea is that you combine the collection of some standard data sets with targeted hypothesis-driven data collection,\u201d he says. \u201cBy combining this in one platform, you take away some of the burden from the patients and from the study site and make it much more efficient.\u201d<\/p><p>Enroll-HD also has a practical goal: to make all HD research easier, speeding up the process of finding drugs and other approaches that really work. Rather than being limited to use by a select group of researchers it is designed as a community resource that makes it faster and more efficient for other researchers to do their projects (for more about how this will work, read \u201cEnroll-HD as a Public Resource\u201c). This is why it\u2019s called a platform\u2014it\u2019s a structure that supports other work.<\/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\t2,094 patients are enrolled in medical studies for every one successful new drug.\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>Basically, it lays out a \u201cWelcome\u201d mat for researchers and pharmaceutical companies to study HD, supplying many of the essential ingredients for a clinical trial, such as a global network of research sites, a carefully maintained database that tracks people\u2019s health over time, and, most importantly, an up-to-date privacy-protected database of people who have HD or the gene mutation who might want to volunteer for a new study. \u201cYou can home in on the group of people who are likely to be eligible for a study or trial,\u201d says Landwehrmeyer, and these individuals can then be invited to join by their own doctor (For more on how that works, read \u201cHow Will I be Invited to Join a Trial?\u201c). \u201cYou make the work much more efficient.\u201d It\u2019s a foundation for all other HD researchers to build upon.<\/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\">The needle in the haystack<\/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 );\">Finding enough of the right people to join up is the biggest challenge of any clinical study or trial. According to one estimate, 40 percent of the cost of testing new drugs for all conditions goes toward finding the right participants\u2014about US $1.9 billion a year in total. Enrolling enough people generally requires twice as long as it is supposed to, and the result is that 80 percent of all clinical trials don\u2019t finish on time. The difficulty of finding participants \u201cmakes trials longer than they should be,\u201d says Cristina Sampaio, MD, PhD, CHDI\u2019s chief clinical officer. \u201cAnd sometimes trials just fail, because people are not able to recruit the patients that they need.\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:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/EHD_5874-1024x680-1-300x199.jpg 300w, https:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/EHD_5874-1024x680-1-768x510.jpg 768w, https:\/\/enroll-hd.org\/wp-content\/uploads\/2021\/05\/EHD_5874-1024x680-1.jpg 1024w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>By having a complete, well-documented and up-to-date secure database of potential volunteers (all identified only by code so that privacy is protected), a drug company or other scientists can find out quickly whether or not the study they want to do is even feasible\u2014whether enough people with the HD gene who are at the appropriate stage of their disease are in the right location to take part in the study. \u201cThis is all about time,\u201d says CHDI president Robi Blumenstein. \u201cAnytime someone says, \u2018We\u2019d like to study this type of patient, with this combination of age and [HD gene] CAG repeats,\u2019 we can look in the database and get the right study up and running as quickly as possible.\u201d The idea is that because this knowledge makes it easier for drug companies to get studies underway, it will help move HD higher up their priority lists.<\/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\tDue to delays with recruiting patients, half of clinical trials take much longer than planned\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 acts like a platform for other studies in other ways. A lot of the paperwork required to conduct these additional projects is already in place because detailed agreements are hammered out when Enroll-HD is launched at each site. The site staff is well-trained in the best ways to measure HD symptoms.<\/p><p>And the medical history of the potential volunteers\u2014how they\u2019ve been doing recently, what medications they\u2019ve been taking, as well as their family history\u2014is already documented, with multiple quality control checks to make sure that it\u2019s all accurate. \u201cIt saves time and money to take advantage of the information already available,\u201d says 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: Average cost for one patient in the first phase of a clinical trial\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>This research platform will also be available to people studying other aspects of HD. For example, if researchers want to work on better ways to measure changes in motor control and involuntary movement in HD, knowing how many people might volunteer will help them plan where and how to do the study, and how long it will take. \u201cIt really helps when planning a study, and it helps you execute the study in a time-efficient way,\u201d says Michael Orth of the University of Ulm. \u201cFor researchers this is really attractive. You are saving yourself a lot of hassle.\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-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\">It's like a smart phone<\/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 suggests that another way to think about the study is like a smartphone; just like the phone provides hardware that programmers can build apps for, Enroll-HD provides a basic system that gets everyone working with the same basic protocols and procedures. From that starting point, all the studies that other researchers will invent and carry out can be thought of like the apps that programmers build and add to the phone.<\/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>Just as the phone inspires software programmers to come up with all kinds of new and creative apps, the idea is that Enroll-HD will spark innovative ideas to test about treating HD.<\/p><p>Maybe one of the most unusual things about Enroll-HD, in comparison to other observational studies, is that it is also designed to improve the quality of care. Because so many people who are already being treated for HD will be involved in the study, and because ways of treating HD symptoms (such as physical therapy or drugs for psychiatric problems) vary a lot from region to region, it should be possible to compare treatment regimens around the world and identify the best ones. Enroll-HD makes it possible to carefully compare how HD is managed in Australia, Argentina, and Austria, and figure out what works best. That information can then be shared worldwide. \u201cThe idea is, let\u2019s capture this information in an appropriately confidential way, and put it in a database so it has extra utility,\u201d says Blumenstein. \u201cThen, you can see which approaches work out better and share best practices across all regions.\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\tThe average drug takes more than 8 years to test\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>Because Enroll-HD is such a large study\u2014bigger than any other similar study for other neurodegenerative diseases\u2014that will last a long time, the hope is that it will also be a beacon for young researchers to bring their talents and energy to fighting HD. Having such a big collaborative study for a relatively rare disease is unique, and it creates an important resource and new research possibilities that will encourage young researchers to view HD as a promising field where they can make a difference.<\/p><p>The study also creates a permanent global community of scientists, health professionals, patients and families, says Sampaio. \u201cThe health professionals are getting training and education, and being made aware of the needs of the community, and simultaneously patients and families are getting educated with more awareness about what\u2019s going on in research and why it\u2019s important,\u201d she says. \u201cThis is an extremely positive process.\u201d<\/p><p>By providing a common set of tools and common goals, the study has the potential to unify the HD research community worldwide. Launching and maintaining it is a big effort, but the rewards will come fairly quickly, predicts Orth. \u201cThe real purpose is treating people, and Enroll-HD has the power to serve that purpose really well, do away with the red tape and hassle, with results that are likely to be robust and reliable,\u201d he says. \u201cThat\u2019s the overall goal\u2014we want to treat people.\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<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Building on Enroll-HD HD Families Learn Building on Enroll-HD Platform Enroll-HD as a platform In some ways, Enroll-HD is not so unusual. Like other observational or \u201cnatural history\u201d studies, it monitors symptoms and underlying changes caused by disease over time. Information is collected every year, from the same people, for a long time. The information [&hellip;]<\/p>\n","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:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/pages\/1000","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/comments?post=1000"}],"version-history":[{"count":95,"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/pages\/1000\/revisions"}],"predecessor-version":[{"id":10712,"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/pages\/1000\/revisions\/10712"}],"up":[{"embeddable":true,"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/pages\/697"}],"wp:attachment":[{"href":"https:\/\/enroll-hd.org\/it\/wp-json\/wp\/v2\/media?parent=1000"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}