{"id":1307,"date":"2022-03-18T11:51:26","date_gmt":"2022-03-18T11:51:26","guid":{"rendered":"https:\/\/fairdata.systems\/home\/?page_id=1307"},"modified":"2022-05-12T07:20:14","modified_gmt":"2022-05-12T07:20:14","slug":"duchenne-parent-project","status":"publish","type":"page","link":"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/","title":{"rendered":"Duchenne Parent Project"},"content":{"rendered":"<p>[vc_row type=&#8221;full-nopad&#8221; full_height=&#8221;yes&#8221; content_placement=&#8221;bottom&#8221; el_id=&#8221;home-1&#8243; css=&#8221;.vc_custom_1647516756486{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/inicio-principal.png?id=1251) !important;}&#8221;][vc_column width=&#8221;2\/3&#8243;][vc_column_text]<\/p>\n<h1>Duchenne Parent<br \/>\nProject<\/h1>\n<p>[\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_column_text]FAIR-compliant semantic modeling, full ETL pipeline, and secure FAIR data hosting[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=&#8221;improvement&#8221;][vc_column][vc_column_text]<\/p>\n<h2>Comprehensive FAIR transformation of patients&#8217; clinical history to ensure maximal reusability for rare disease research<\/h2>\n<p>[\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text]Legacy data systems can be difficult to reuse due to custom dataq exploration and extraction interfaces, customized data formats, and lack of standardization in terminologies. FAIR Data Systems worked closely with representatives of the Duchenne Parent Project to design and implement a FAIRification project that harmonized their rich clinical data with other rare disease repositories throughout Europe. [\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text]We then enveloped this in a rich layer of metadata so that machines can automatically discover and understand these data as they explore the biomedical research data space. All the while, the data itself is kept tightly protected and safe.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row el_id=&#8221;testimonials&#8221;][vc_column][vc_column_text]<\/p>\n<h2>TESTIMONIALS<\/h2>\n<p>[\/vc_column_text][vc_row_inner el_id=&#8221;testi&#8221;][vc_column_inner width=&#8221;1\/6&#8243; el_id=&#8221;testi-1&#8243;][vc_single_image image=&#8221;1615&#8243;][\/vc_column_inner][vc_column_inner width=&#8221;1\/6&#8243; el_id=&#8221;testi-2&#8243;][vc_column_text]Duchenne Parent Project<br \/>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner width=&#8221;2\/3&#8243;][vc_column_text]Our journey with FAIR Data Systems was truly extraordinary. As a Rare Disease Patient Organization we were relatively FAIR-aware but had no idea on how to go about transforming our patient-led registry (Duchenne Data Platform) into a FAIR registry. Working with one of the best FAIR experts in the world, made our FAIRification process a walk in the park. They understood straightaway the scope of our project and its complexities, delivered each phase of the project in less time than they originally planned and created a new FAIR solution tailored to our specific needs. Most importantly, they&#8217;ve made what was our FAIR project &#8220;their own&#8221;, helping us achieve a FAIR status the same year. Now that we&#8217;re upscaling our FAIR efforts, FAIR Data Systems are our technical partners for life!<\/p>\n<p>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[vc_row type=&#8221;full-nopad&#8221; full_height=&#8221;yes&#8221; content_placement=&#8221;bottom&#8221; el_id=&#8221;home-1&#8243; css=&#8221;.vc_custom_1647516756486{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/inicio-principal.png?id=1251) !important;}&#8221;][vc_column width=&#8221;2\/3&#8243;][vc_column_text] Duchenne Parent Project [\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_column_text]FAIR-compliant semantic modeling, full ETL pipeline, and secure FAIR data hosting[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=&#8221;improvement&#8221;][vc_column][vc_column_text] Comprehensive FAIR transformation of patients&#8217; clinical history to ensure maximal reusability for rare disease research [\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text]Legacy data systems can be difficult to reuse due to custom dataq exploration and &hellip;<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"footnotes":""},"class_list":["post-1307","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v20.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Duchenne Parent Project - FAIR Data Systems<\/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:\/\/fairdata.systems\/home\/duchenne-parent-project\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Duchenne Parent Project - FAIR Data Systems\" \/>\n<meta property=\"og:description\" content=\"[vc_row type=&#8221;full-nopad&#8221; full_height=&#8221;yes&#8221; content_placement=&#8221;bottom&#8221; el_id=&#8221;home-1&#8243; css=&#8221;.vc_custom_1647516756486{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/inicio-principal.png?id=1251) !important;}&#8221;][vc_column width=&#8221;2\/3&#8243;][vc_column_text] Duchenne Parent Project [\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_column_text]FAIR-compliant semantic modeling, full ETL pipeline, and secure FAIR data hosting[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=&#8221;improvement&#8221;][vc_column][vc_column_text] Comprehensive FAIR transformation of patients&#8217; clinical history to ensure maximal reusability for rare disease research [\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text]Legacy data systems can be difficult to reuse due to custom dataq exploration and &hellip;\" \/>\n<meta property=\"og:url\" content=\"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/\" \/>\n<meta property=\"og:site_name\" content=\"FAIR Data Systems\" \/>\n<meta property=\"article:modified_time\" content=\"2022-05-12T07:20:14+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/\",\"url\":\"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/\",\"name\":\"Duchenne Parent Project - FAIR Data Systems\",\"isPartOf\":{\"@id\":\"https:\/\/fairdata.systems\/home\/#website\"},\"datePublished\":\"2022-03-18T11:51:26+00:00\",\"dateModified\":\"2022-05-12T07:20:14+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/#breadcrumb\"},\"inLanguage\":\"en-CA\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/fairdata.systems\/home\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Duchenne Parent Project\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/fairdata.systems\/home\/#website\",\"url\":\"https:\/\/fairdata.systems\/home\/\",\"name\":\"FAIR Data Systems\",\"description\":\"Experts in planning and building FAIR compliant systems\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/fairdata.systems\/home\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-CA\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Duchenne Parent Project - FAIR Data Systems","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/","og_locale":"en_US","og_type":"article","og_title":"Duchenne Parent Project - FAIR Data Systems","og_description":"[vc_row type=&#8221;full-nopad&#8221; full_height=&#8221;yes&#8221; content_placement=&#8221;bottom&#8221; el_id=&#8221;home-1&#8243; css=&#8221;.vc_custom_1647516756486{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/inicio-principal.png?id=1251) !important;}&#8221;][vc_column width=&#8221;2\/3&#8243;][vc_column_text] Duchenne Parent Project [\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_column_text]FAIR-compliant semantic modeling, full ETL pipeline, and secure FAIR data hosting[\/vc_column_text][\/vc_column][\/vc_row][vc_row el_id=&#8221;improvement&#8221;][vc_column][vc_column_text] Comprehensive FAIR transformation of patients&#8217; clinical history to ensure maximal reusability for rare disease research [\/vc_column_text][vc_row_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text]Legacy data systems can be difficult to reuse due to custom dataq exploration and &hellip;","og_url":"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/","og_site_name":"FAIR Data Systems","article_modified_time":"2022-05-12T07:20:14+00:00","twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/","url":"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/","name":"Duchenne Parent Project - FAIR Data Systems","isPartOf":{"@id":"https:\/\/fairdata.systems\/home\/#website"},"datePublished":"2022-03-18T11:51:26+00:00","dateModified":"2022-05-12T07:20:14+00:00","breadcrumb":{"@id":"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/#breadcrumb"},"inLanguage":"en-CA","potentialAction":[{"@type":"ReadAction","target":["https:\/\/fairdata.systems\/home\/duchenne-parent-project\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/fairdata.systems\/home\/duchenne-parent-project\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/fairdata.systems\/home\/"},{"@type":"ListItem","position":2,"name":"Duchenne Parent Project"}]},{"@type":"WebSite","@id":"https:\/\/fairdata.systems\/home\/#website","url":"https:\/\/fairdata.systems\/home\/","name":"FAIR Data Systems","description":"Experts in planning and building FAIR compliant systems","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/fairdata.systems\/home\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"en-CA"}]}},"_links":{"self":[{"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/pages\/1307","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/comments?post=1307"}],"version-history":[{"count":5,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/pages\/1307\/revisions"}],"predecessor-version":[{"id":1617,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/pages\/1307\/revisions\/1617"}],"wp:attachment":[{"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/media?parent=1307"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}