{"id":2269,"date":"2020-09-07T08:05:45","date_gmt":"2020-09-07T15:05:45","guid":{"rendered":"http:\/\/wishesforelliott.flywheelsites.com\/?page_id=2269"},"modified":"2023-05-02T14:25:14","modified_gmt":"2023-05-02T21:25:14","slug":"research-participating-and-supporting","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/gl_es\/research-participating-and-supporting\/","title":{"rendered":"Research &#038; Advocacy"},"content":{"rendered":"<h1>\n\t\t\t\tM\u00e9dico\n\t\t\t<\/h1>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/11\/DNA-Color.jpg\" alt=\"DNA Color - Strands\" itemprop=\"image\" title=\"DNA Color\" onerror=\"this.style.display='none'\"  \/>\n\t<p>As DEE families know all too well, treatment of most of our rare diseases is plagued by major areas of medical uncertainties. Recognizing that the only real hope for substantial improvements in the quality\u00a0of life of our children is research. The research category covers a range of topics including quality improvement efforts, clinical trials, national research priorities, and brain and tissue banks.<\/p>\n\t<h1>\n\t\t\t\tBusca no Centro de Recursos\n\t\t\t<\/h1>\n\t<form role=\"search\" action=\"https:\/\/deepconnections.net\" method=\"get\" data-trp-original-action=\"https:\/\/deepconnections.net\">\n\t\t\t\t\t\t<input placeholder=\"Escriba o termo de busca que che interesa\" type=\"search\" name=\"s\" title=\"Busca\" value=\"\"\/>\n\t\t\t\t\t\t\t\t\t<button type=\"submit\">\n\t\t\t\t\tBusca\n\t\t\t\t\t\t\t\t\t\t\t\t<\/button>\n\t\t\t<input type=\"hidden\" name=\"trp-form-language\" value=\"gl_es\"\/><\/form>\n\t<h1>\n\t\t\t\tResearch Categories\n\t\t\t<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/11\/Brain-Tissue.jpg\" alt=\"Brain Tissue Research\"\/>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/research-participating-and-supporting\/brain-tissue-donation\/\" target=\"_blank\" rel=\"noopener\" role=\"button\" aria-label=\"Le m\u00e1is\">\n\t\t\t\t\t\t\tLe m\u00e1is\n\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t\t\tDoaz\u00f3n de tecido cerebral\t\t<\/h3>\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/11\/Clinical-Research.jpg\" alt=\"clinical trial\"\/>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/research-participating-and-supporting\/clinical-trials\/\" target=\"_blank\" rel=\"noopener\" role=\"button\" aria-label=\"Le m\u00e1is\">\n\t\t\t\t\t\t\tLe m\u00e1is\n\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t\t\tEnsaios cl\u00ednicos\t\t<\/h3>\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/12\/CTE-2.png\" alt=\"CTE 2\"\/>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/research-participating-and-supporting\/curing-the-epilepsies\/\" target=\"_blank\" rel=\"noopener\" role=\"button\" aria-label=\"Le m\u00e1is\">\n\t\t\t\t\t\t\tLe m\u00e1is\n\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t\t\tCuring The Epilepsies\t\t<\/h3>\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/11\/Genetic-Markers.jpg\" alt=\"gentic modifiers\"\/>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/research-participating-and-supporting\/genetic-modifiers-and-biomarkers\/\" target=\"_blank\" rel=\"noopener\" role=\"button\" aria-label=\"Le m\u00e1is\">\n\t\t\t\t\t\t\tLe m\u00e1is\n\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t\t\tGenetic Modifiers, Biomarkers &#8211; Coming Soon\t\t<\/h3>\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/11\/ruler-e1637556308417.jpeg\" alt=\"ruler\"\/>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/outcomes\/\" target=\"_blank\" rel=\"noopener\" role=\"button\" aria-label=\"Le m\u00e1is\">\n\t\t\t\t\t\t\tLe m\u00e1is\n\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t\t\tO proxecto Inchstone\t\t<\/h3>\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/05\/Data.jpg\" alt=\"Data\"\/>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/research-participating-and-supporting\/managing-your-data\/\" target=\"_blank\" rel=\"noopener\" role=\"button\" aria-label=\"Le m\u00e1is\">\n\t\t\t\t\t\t\tLe m\u00e1is\n\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t\t\tXestionando os teus datos\t\t<\/h3>\n\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/11\/Participating-Research.jpg\" alt=\"participating in research\"\/>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/research-participating-and-supporting\/participating-in-research\/\" target=\"_blank\" rel=\"noopener\" role=\"button\" aria-label=\"Le m\u00e1is\">\n\t\t\t\t\t\t\tLe m\u00e1is\n\t\t<\/a>\n\t\t\t\t\t\t<h3>\n\t\t\t\t\t\tParticipando en Investigaci\u00f3n\t\t<\/h3>\n\t<h1>\n\t\t\t\tMost Recent Research Entries\n\t\t\t<\/h1>\n\t\t<p>Sorry, we couldn&#8217;t find any posts. Please try a different search.<\/p>\n\t\t\t\t<form aria-label=\"Busca\" method=\"get\" role=\"search\" action=\"https:\/\/deepconnections.net\/\" title=\"Type and press Enter to search.\" data-trp-original-action=\"https:\/\/deepconnections.net\/\">\n\t<input aria-label=\"Busca\" type=\"search\" name=\"s\" placeholder=\"Busca\"  value=\"\" onfocus=\"if (this.value === 'Search') { this.value = ''; }\" onblur=\"if (this.value === '') this.value='Search';\" \/>\n<input type=\"hidden\" name=\"trp-form-language\" value=\"gl_es\"\/><\/form>\n\t<h1>\n\t\t\t\tMost Recent Webinars &#038; Videos\n\t\t\t<\/h1>\n\t<meta itemscope itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/WebPage\" itemid=\"https:\/\/deepconnections.net\/2021\/11\/21\/outcomes-workshop-1-copy\/\" content=\"RECORDING &#8211; Inchstone Outcomes Workshop 2\" \/><meta itemprop=\"datePublished\" content=\"2021-11-21\" \/><meta itemprop=\"dateModified\" content=\"2022-01-27\" \/><meta itemprop=\"name\" content=\"DEE-P Information Resource Center\"\/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/author\/she55utwe3\/\" \/><meta itemprop=\"name\" content=\"G C\" \/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/11\/ruler2.jpeg\" \/><meta itemprop=\"width\" content=\"1500\" \/><meta itemprop=\"height\" content=\"724\" \/><meta itemprop=\"interactionType\" content=\"https:\/\/schema.org\/CommentAction\" \/><meta itemprop=\"userInteractionCount\" content=\"0\" \/>\n\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/2021\/11\/21\/outcomes-workshop-1-copy\/\" title=\"RECORDING &#8211; Inchstone Outcomes Workshop 2\"><\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/11\/ruler2-1024x494.jpeg\" alt=\"ruler2\" itemprop=\"image\" data-no-lazy=\"1\" height=\"494\" width=\"1024\" title=\"ruler2\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t<h3 itemprop=\"headline\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\tRECORDING &#8211; Inchstone Outcomes Workshop 2\t\t\t\t\t\t\t\t\t\t\t<\/h3>\n\t<meta itemscope itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/WebPage\" itemid=\"https:\/\/deepconnections.net\/2021\/11\/05\/outcomes-workshop-1\/\" content=\"RECORDING &#8211; Inchstone Outcomes Workshop 1\" \/><meta itemprop=\"datePublished\" content=\"2021-11-05\" \/><meta itemprop=\"dateModified\" content=\"2022-01-27\" \/><meta itemprop=\"name\" content=\"DEE-P Information Resource Center\"\/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/author\/she55utwe3\/\" \/><meta itemprop=\"name\" content=\"G C\" \/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/11\/ruler-e1637556308417.jpeg\" \/><meta itemprop=\"width\" content=\"750\" \/><meta itemprop=\"height\" content=\"563\" \/><meta itemprop=\"interactionType\" content=\"https:\/\/schema.org\/CommentAction\" \/><meta itemprop=\"userInteractionCount\" content=\"0\" \/>\n\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/2021\/11\/05\/outcomes-workshop-1\/\" title=\"RECORDING &#8211; Inchstone Outcomes Workshop 1\"><\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/11\/ruler-e1637556308417.jpeg\" alt=\"ruler\" itemprop=\"image\" data-no-lazy=\"1\" height=\"563\" width=\"750\" title=\"ruler\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t<h3 itemprop=\"headline\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\tRECORDING &#8211; Inchstone Outcomes Workshop 1\t\t\t\t\t\t\t\t\t\t\t<\/h3>\n\t<meta itemscope itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/WebPage\" itemid=\"https:\/\/deepconnections.net\/2021\/11\/02\/how-can-you-curing-the-epilepsies\/\" content=\"What can YOU do to help cure the epilepsies?\" \/><meta itemprop=\"datePublished\" content=\"2021-11-02\" \/><meta itemprop=\"dateModified\" content=\"2022-11-03\" \/><meta itemprop=\"name\" content=\"DEE-P Information Resource Center\"\/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/author\/she55utwe3\/\" \/><meta itemprop=\"name\" content=\"G C\" \/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/12\/CTE-2.png\" \/><meta itemprop=\"width\" content=\"640\" \/><meta itemprop=\"height\" content=\"426\" \/><meta itemprop=\"interactionType\" content=\"https:\/\/schema.org\/CommentAction\" \/><meta itemprop=\"userInteractionCount\" content=\"0\" \/>\n\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/2021\/11\/02\/how-can-you-curing-the-epilepsies\/\" title=\"Que podes facer TI para axudar a curar as epilepsias?\"><\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/12\/CTE-2.png\" alt=\"CTE 2\" itemprop=\"image\" data-no-lazy=\"1\" height=\"426\" width=\"640\" title=\"CTE 2\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t<h3 itemprop=\"headline\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\tQue podes facer TI para axudar a curar as epilepsias?\t\t\t\t\t\t\t\t\t\t\t<\/h3>\n\t<meta itemscope itemprop=\"mainEntityOfPage\" itemtype=\"https:\/\/schema.org\/WebPage\" itemid=\"https:\/\/deepconnections.net\/2021\/06\/29\/how-effective-is-your-epilepsy-care\/\" content=\"How Effective is Your Epilepsy Care?\" \/><meta itemprop=\"datePublished\" content=\"2021-06-29\" \/><meta itemprop=\"dateModified\" content=\"2021-08-16\" \/><meta itemprop=\"name\" content=\"DEE-P Information Resource Center\"\/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/author\/1\/\" \/><meta itemprop=\"name\" content=\"Matt\" \/><meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2020\/11\/Participating-Research.jpg\" \/><meta itemprop=\"width\" content=\"640\" \/><meta itemprop=\"height\" content=\"426\" \/><meta itemprop=\"interactionType\" content=\"https:\/\/schema.org\/CommentAction\" \/><meta 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Recognizing that the only real hope for&hellip;<\/p>","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-2269","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Research &amp; Advocacy - DEE-P Information Resource Center<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/deepconnections.net\/gl_es\/ru_ru\/research-participating-and-supporting\/\" \/>\n<meta property=\"og:locale\" content=\"gl_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Research &amp; Advocacy\" \/>\n<meta property=\"og:description\" content=\"Medical As DEE families know all too well, treatment of most of our rare diseases is plagued by major areas of medical uncertainties. 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