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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\">Construyendo sobre 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___69d2a7e86a10e\" ><a href=\"\/es\/for-participants\/\" class=\"jkit-button-wrapper\">Familias 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_69d2a7e86b05a\" ><a href=\"\" class=\"jkit-button-wrapper\">Aprender<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\">Construyendo sobre 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\">Plataforma<\/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 como plataforma<\/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\" \/>En cierto modo, el Enroll-HD no es tan inusual. Al igual que otros estudios observacionales o de \u201chistoria natural\u201d, monitorea los s\u00edntomas y los cambios subyacentes causados por la enfermedad a lo largo del tiempo. Se recopila informaci\u00f3n cada a\u00f1o, de las mismas personas, durante mucho tiempo. La informaci\u00f3n puede ser de gran ayuda en la b\u00fasqueda de tratamientos porque proporciona mediciones confiables de lo que sucede dentro del cerebro y el resto del cuerpo con la EH. Y es esencial para probar nuevos medicamentos destinados a prevenir o retardar la progresi\u00f3n de la enfermedad; La \u00fanica manera de saber si un tratamiento realmente est\u00e1 funcionando es tener un registro preciso de lo que suele suceder a medida que avanza la enfermedad. Luego, en los ensayos cl\u00ednicos, se puede administrar el medicamento a voluntarios y comparar los resultados con el curso previsto de la enfermedad. Por todas estas razones, Enroll-HD se parece mucho a otros estudios observacionales de enfermedades como el Parkinson y el 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\tComo promedio en estudios con f\u00e1rmacos, dos tercios de los centros no reclutan suficientes pacientes.\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>Pero en otros aspectos, Enroll-HD es muy diferente ya que, a diferencia de la mayor\u00eda de los estudios, combina observaciones con nuevas oportunidades para que los investigadores realicen subestudios que planteen preguntas cient\u00edficas espec\u00edficas, dice el Dr. Bernhard Landwehrmeyer, investigador principal de Enroll-HD. \"La idea es combinar la recopilaci\u00f3n de algunos conjuntos de datos est\u00e1ndar con la recopilaci\u00f3n de datos espec\u00edficos basados en hip\u00f3tesis\", afirma. \"Al combinar esto en una sola plataforma, se elimina parte de la carga de los pacientes y del centro de estudio, as\u00ed se hace mucho m\u00e1s eficiente.\".<\/p><p>Enroll-HD tambi\u00e9n tiene un objetivo pr\u00e1ctico: facilitar toda la investigaci\u00f3n de la EH, acelerando el proceso de b\u00fasqueda de f\u00e1rmacos y otros enfoques que realmente funcionen. En lugar de limitarse al uso de un grupo selecto de investigadores, est\u00e1 dise\u00f1ado como un recurso comunitario que hace que otros investigadores puedan realizar sus proyectos de manera m\u00e1s r\u00e1pida y eficiente (para obtener m\u00e1s informaci\u00f3n sobre c\u00f3mo funcionar\u00e1 esto, lea &quot;Enroll-HD como recurso p\u00fablico&quot; ). Por eso se llama plataforma: es una estructura que respalda otros trabajos.<\/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\tPor cada nuevo f\u00e1rmaco exitoso se inscriben 2.094 pacientes en estudios m\u00e9dicos.\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>B\u00e1sicamente, presenta un tapete de \u201cbienvenida\u201d para que los investigadores y las compa\u00f1\u00edas farmac\u00e9uticas estudien la EH, proporcionando muchos de los ingredientes esenciales para un ensayo cl\u00ednico, como una red global de sitios de investigaci\u00f3n, una base de datos cuidadosamente mantenida que rastrea la salud de las personas a lo largo del tiempo, y, lo m\u00e1s importante, una base de datos actualizada y protegida de la privacidad de personas con EH o mutaci\u00f3n gen\u00e9tica que podr\u00edan querer ofrecerse como voluntarias para un nuevo estudio. &quot;Puede centrarse en el grupo de personas que probablemente sean elegibles para un estudio o ensayo&quot;, dice Landwehrmeyer, y luego su propio m\u00e9dico puede invitar a estas personas a unirse (para obtener m\u00e1s informaci\u00f3n sobre c\u00f3mo funciona, lea &quot;C\u00f3mo funciona esto&quot;). \u00bfMe invitar\u00e1n a unirme a un ensayo?\u201c). &quot;Haces que el trabajo sea mucho m\u00e1s eficiente&quot;. Es una base sobre la que pueden basarse todos los dem\u00e1s investigadores de la EH.<\/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\">La aguja en el pajar<\/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 );\">Encontrar suficientes personas adecuadas para unirse es el mayor desaf\u00edo de cualquier estudio o ensayo cl\u00ednico. Seg\u00fan una estimaci\u00f3n, el 40 por ciento del costo de probar nuevos medicamentos para todas las enfermedades se destina a encontrar los participantes adecuados: alrededor de $1.900 millones de d\u00f3lares al a\u00f1o en total. Inscribir a suficientes personas generalmente requiere el doble de tiempo de lo que se supone, y el resultado es que el 80 por ciento de todos los ensayos cl\u00ednicos no terminan a tiempo. La dificultad para encontrar participantes &quot;hace que los ensayos sean m\u00e1s largos de lo que deber\u00edan&quot;, dice Cristina Sampaio, MD, PhD, directora cl\u00ednica del CHDI. &quot;Y a veces los ensayos simplemente fracasan porque las personas no pueden reclutar a los pacientes que necesitan&quot;.<\/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\" \/>Al tener una base de datos segura, completa, bien documentada y actualizada de voluntarios potenciales (todos identificados s\u00f3lo por c\u00f3digo para proteger la privacidad), una compa\u00f1\u00eda farmac\u00e9utica u otros cient\u00edficos pueden descubrir r\u00e1pidamente si el estudio que desean realizar es factible realizarlo o no: si suficientes personas con el gen de la EH que se encuentran en la etapa adecuada de su enfermedad se encuentran en el lugar correcto para participar en el estudio. \u201cTodo esto es cuesti\u00f3n de tiempo\u201d, afirma el presidente del CHDI, Robi Blumenstein. \u201cCada vez que alguien dice: 'Nos gustar\u00eda estudiar este tipo de paciente, con esta combinaci\u00f3n de edad y repeticiones CAG [del gen HD]', podemos buscar en la base de datos y poner en marcha el estudio correcto lo m\u00e1s r\u00e1pido posible. \" La idea es que, dado que este conocimiento facilita que las compa\u00f1\u00edas farmac\u00e9uticas pongan en marcha estudios, ayudar\u00e1 a que la EH ocupe un lugar m\u00e1s alto en sus listas de prioridades.<\/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\tDebido a retrasos en el reclutamiento de pacientes, la mitad de los ensayos cl\u00ednicos tardan mucho m\u00e1s de lo 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 act\u00faa como plataforma para otros estudios de otras formas. Gran parte del papeleo necesario para llevar a cabo estos proyectos adicionales ya est\u00e1 implementado porque los acuerdos detallados se elaboran cuando se lanza Enroll-HD en cada sitio. El personal del sitio est\u00e1 bien capacitado sobre las mejores formas de medir los s\u00edntomas de la EH.<\/p><p>Y el historial m\u00e9dico de los posibles voluntarios (c\u00f3mo les ha ido recientemente, qu\u00e9 medicamentos han estado tomando, as\u00ed como sus antecedentes familiares) ya est\u00e1 documentado, con m\u00faltiples controles de calidad para garantizar que todo sea preciso. &quot;Aprovechar la informaci\u00f3n ya disponible ahorra tiempo y dinero&quot;, afirma 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 promedio de un paciente en la primera fase de un ensayo cl\u00ednico\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>Esta plataforma de investigaci\u00f3n tambi\u00e9n estar\u00e1 disponible para personas que estudien otros aspectos de la EH. Por ejemplo, si los investigadores quieren trabajar en mejores formas de medir los cambios en el control motor y el movimiento involuntario en la EH, saber cu\u00e1ntas personas podr\u00edan ofrecerse como voluntarias les ayudar\u00e1 a planificar d\u00f3nde y c\u00f3mo realizar el estudio, y cu\u00e1nto tiempo llevar\u00e1. &quot;Es realmente \u00fatil a la hora de planificar un estudio y ayuda a ejecutarlo de manera eficiente en el tiempo&quot;, dice Michael Orth de la Universidad de Ulm. \u201cPara los investigadores esto es realmente atractivo. Te est\u00e1s ahorrando muchas molestias\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\">Es como un tel\u00e9fono inteligente<\/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 sugiere que otra forma de pensar en el estudio es como un tel\u00e9fono inteligente; As\u00ed como el tel\u00e9fono proporciona hardware para el cual los programadores pueden crear aplicaciones, el Enroll-HD proporciona un sistema b\u00e1sico que hace que todos trabajen con los mismos protocolos y procedimientos b\u00e1sicos. Desde ese punto de partida, todos los estudios que otros investigadores inventen y lleven a cabo pueden considerarse como las aplicaciones que los programadores crean y a\u00f1aden al tel\u00e9fono.<\/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>As\u00ed como el tel\u00e9fono inspira a los programadores de software a crear todo tipo de aplicaciones nuevas y creativas, la idea es que el Enroll-HD genere ideas innovadoras para probar sobre el tratamiento de la EH.<\/p><p>Quiz\u00e1s una de las cosas m\u00e1s inusuales del Enroll-HD, en comparaci\u00f3n con otros estudios observacionales, es que tambi\u00e9n est\u00e1 dise\u00f1ado para mejorar la calidad de la atenci\u00f3n. Debido a que en el estudio participar\u00e1n muchas personas que ya est\u00e1n recibiendo tratamiento para la EH, y debido a que las formas de tratar los s\u00edntomas de la EH (como la fisioterapia o los medicamentos para problemas psiqui\u00e1tricos) var\u00edan mucho de una regi\u00f3n a otra, deber\u00eda ser posible comparar reg\u00edmenes de tratamiento en todo el mundo e identificar los mejores. Enroll-HD permite comparar cuidadosamente c\u00f3mo se gestiona la HD en Australia, Argentina y Austria, y descubrir qu\u00e9 funciona mejor. Luego, esa informaci\u00f3n se puede compartir en todo el mundo. &quot;La idea es capturar esta informaci\u00f3n de una manera apropiadamente confidencial y colocarla en una base de datos para que tenga una utilidad adicional&quot;, dice Blumenstein. &quot;Entonces podr\u00e1s ver qu\u00e9 enfoques funcionan mejor y compartir las mejores pr\u00e1cticas en todas las regiones&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-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\tUn medicamento promedio tarda m\u00e1s de 8 a\u00f1os en probarse\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>Debido a que Enroll-HD es un estudio tan grande (m\u00e1s grande que cualquier otro estudio similar para otras enfermedades neurodegenerativas) que durar\u00e1 mucho tiempo, la esperanza es que tambi\u00e9n sea un faro para que los investigadores j\u00f3venes aporten sus talentos y energ\u00eda a la lucha contra la EH. Tener un estudio colaborativo tan grande para una enfermedad relativamente rara es \u00fanico y crea un recurso importante y nuevas posibilidades de investigaci\u00f3n que alentar\u00e1n a los investigadores j\u00f3venes a ver la EH como un campo prometedor en el que pueden marcar la diferencia.<\/p><p>El estudio tambi\u00e9n crea una comunidad global permanente de cient\u00edficos, profesionales de la salud, pacientes y familias, afirma Sampaio. &quot;Los profesionales de la salud est\u00e1n recibiendo capacitaci\u00f3n y educaci\u00f3n, y est\u00e1n siendo conscientes de las necesidades de la comunidad, y simult\u00e1neamente los pacientes y las familias est\u00e1n siendo educados con mayor conciencia sobre lo que est\u00e1 sucediendo en la investigaci\u00f3n y por qu\u00e9 es importante&quot;, dice. &quot;Este es un proceso extremadamente positivo&quot;.<\/p><p>Al proporcionar un conjunto com\u00fan de herramientas y objetivos comunes, el estudio tiene el potencial de unificar a la comunidad de investigaci\u00f3n de la EH en todo el mundo. Lanzarlo y mantenerlo supone un gran esfuerzo, pero las recompensas llegar\u00e1n bastante r\u00e1pido, predice Orth. &quot;El verdadero prop\u00f3sito es tratar a las personas, y Enroll-HD tiene el poder de cumplir ese prop\u00f3sito realmente bien, eliminar la burocracia y las molestias, con resultados que probablemente sean s\u00f3lidos y confiables&quot;, afirma. &quot;Ese es el objetivo general: queremos tratar a las personas&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>Construyendo sobre Enroll-HD HD Las familias aprenden Construyendo sobre la plataforma Enroll-HD Enroll-HD como plataforma En cierto modo, Enroll-HD no es tan inusual. Al igual que otros estudios observacionales o de \u201chistoria natural\u201d, monitorea los s\u00edntomas y los cambios subyacentes causados por la enfermedad a lo largo del tiempo. Se recopila informaci\u00f3n cada a\u00f1o, de las mismas personas, durante mucho tiempo. La informaci\u00f3n [\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\/es\/wp-json\/wp\/v2\/pages\/1000","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/comments?post=1000"}],"version-history":[{"count":95,"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/pages\/1000\/revisions"}],"predecessor-version":[{"id":10712,"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/pages\/1000\/revisions\/10712"}],"up":[{"embeddable":true,"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/pages\/697"}],"wp:attachment":[{"href":"https:\/\/www.enroll-hd.org\/es\/wp-json\/wp\/v2\/media?parent=1000"}],"curies":[{"name":"gracias","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}