{"id":1626,"date":"2022-09-02T14:52:43","date_gmt":"2022-09-02T14:52:43","guid":{"rendered":"https:\/\/fairdata.systems\/home\/?page_id=1626"},"modified":"2023-03-29T11:59:44","modified_gmt":"2023-03-29T11:59:44","slug":"media-and-press","status":"publish","type":"page","link":"https:\/\/fairdata.systems\/home\/media-and-press\/","title":{"rendered":"Media and Press"},"content":{"rendered":"

[vc_row css=”.vc_custom_1662130185379{padding-top: 50px !important;padding-bottom: 50px !important;background-color: #282828 !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][vc_column css=”.vc_custom_1662129992880{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/fondo-data-intehration.png?id=1228) !important;background-position: 0 0 !important;background-repeat: repeat !important;}”][vc_row_inner][vc_column_inner width=”1\/3″][vc_tweetmeme share_hashtag=”FAIRData,PressRelease” large_button=”true”][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_custom_heading text=”March 22, 2023 | Joint Press Release with ERN EURO-NMD and FAIR Data Systems”][vc_column_text el_id=”WDO_Pres_2023″]Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or Patients<\/a><\/p>\n

How many patients with rare neuromuscular disorders are there? How much time is there between the appearance of the first symptoms and the diagnosis of a rare disorder? These questions are highly relevant for patients but also difficult questions to answer. Most of the answers can be found in patient registries, but there are many different registries and, up to now, it was difficult to query these registries all at the same time. We now provide a proof-of-concept demonstrating how five different rare disease registries for neuromuscular disorders can now be jointly queried because they are interoperable, announced Peter-Bram \u2018t Hoen, Professor of Bioinformatics at Radboud University Medical Center.<\/p>\n

 <\/p>\n

\u201cWe have made it easy for new FAIR registries to participate in joint analyses with other registries, answering questions around disease diagnosis, aetiology and progression. Patients can be assured that their data are being reused, in a secure manner, by scientists, clinicians, or other authenticated and authorised health professionals – which is their desire,\u201d <\/em><\/strong>said Peter-Bram who is ERN EURO-NMD FAIRification and Interoperability Work Package Lead.<\/em><\/p>\n

.[\/vc_column_text][vc_custom_heading text=”FAIR Data Systems awarded Proyecto “Kair\u00f3s“” font_container=”tag:h2|text_align:center”][vc_column_text el_id=”Kairos_2022″]<\/p>\n


\n\"\"<\/center> <\/p>\n


\n\"\"<\/center> <\/p>\n

\"\"<\/center> <\/p>\n

FAIR DATA SYSTEMS ha obtenido una ayuda dentro del Proyecto “Kair\u00f3s” en la Convocatoria 2018 de ayudas para potenciar la innovaci\u00f3n tecnol\u00f3gica e impulsar la transferencia de tecnolog\u00eda<\/strong> al sector productivo, cofinanciadas al 50% por la Comunidad de Madrid y el Fondo Europeo de Desarrollo Regional<\/strong> en el marco del programa operativo FEDER 2014-2020 de la Comunidad de Madrid.<\/p>\n

 <\/p>\n

La ayuda se enmarca en las actividades de internacionalizaci\u00f3n de la empresa y m\u00e1s concretamente para una actividad de comercializaci\u00f3n en Alemania. En esta actividad se pudieron presentar nuestros servicios y productos a empresas lideres que pueden ser potenciales clientes y que mostraron inter\u00e9s en nuestras aplicaciones de desarrollo de los principios FAIR aplicado a los datos.<\/p>\n

 <\/p>\n

Fair Data Systems es la empresa l\u00edder en Espa\u00f1a en consultor\u00eda y servicios para la aplicaci\u00f3n de los principios FAIR. Entre otras aplicaciones disponemos de un evaluador FAIR, servicios de hosting de acuerdo con FAIR, y asesor\u00eda en implantaci\u00f3n de FAIR en todo tipo de bases de datos.<\/p>\n

 <\/p>\n

Gracias a esta ayuda, podremos acelerar nuestro plan comercial y crecimiento de la compa\u00f1\u00eda en otros pa\u00edses de nuestro entorno.<\/p>\n

 <\/p>\n

 <\/p>\n

[\/vc_column_text][vc_separator][vc_custom_heading text=”Press release on achieving Duchenne data integration” font_container=”tag:h2|text_align:center|color:%238224e3″ google_fonts=”font_family:Montserrat%3Aregular%2C700|font_style:400%20regular%3A400%3Anormal” link=”url:https%3A%2F%2Ffairdata.systems%2Fhome%2Fwp-content%2Fuploads%2F2022%2F09%2FDPP-EURONMD-FDS-Joint-Press-Release.pdf|title:Joint%20Press%20Release|target:%20_blank|”][vc_column_text]<\/p>\n

We are pleased to announce that our work with the Duchenne Parent Project has resulted in the ability to share and integrate data between patient registries while strictly preserving the privacy of the patient<\/p>\n

[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row]<\/p>\n","protected":false},"excerpt":{"rendered":"

[vc_row css=”.vc_custom_1662130185379{padding-top: 50px !important;padding-bottom: 50px !important;background-color: #282828 !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][vc_column css=”.vc_custom_1662129992880{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/fondo-data-intehration.png?id=1228) !important;background-position: 0 0 !important;background-repeat: repeat !important;}”][vc_row_inner][vc_column_inner width=”1\/3″][vc_tweetmeme share_hashtag=”FAIRData,PressRelease” large_button=”true”][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_custom_heading text=”March 22, 2023 | Joint Press Release with ERN EURO-NMD and FAIR Data Systems”][vc_column_text el_id=”WDO_Pres_2023″]Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or …<\/p>\n","protected":false},"author":3,"featured_media":1609,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"footnotes":""},"class_list":["post-1626","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nMedia and Press - 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\/media-and-press\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Media and Press - FAIR Data Systems\" \/>\n<meta property=\"og:description\" content=\"[vc_row css=”.vc_custom_1662130185379{padding-top: 50px !important;padding-bottom: 50px !important;background-color: #282828 !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][vc_column css=”.vc_custom_1662129992880{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/fondo-data-intehration.png?id=1228) !important;background-position: 0 0 !important;background-repeat: repeat !important;}”][vc_row_inner][vc_column_inner width=”1\/3″][vc_tweetmeme share_hashtag=”FAIRData,PressRelease” large_button=”true”][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_custom_heading text=”March 22, 2023 | Joint Press Release with ERN EURO-NMD and FAIR Data Systems”][vc_column_text el_id=”WDO_Pres_2023″]Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or …\" \/>\n<meta property=\"og:url\" content=\"https:\/\/fairdata.systems\/home\/media-and-press\/\" \/>\n<meta property=\"og:site_name\" content=\"FAIR Data Systems\" \/>\n<meta property=\"article:modified_time\" content=\"2023-03-29T11:59:44+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/05\/cropped-favicon.png\" \/>\n\t<meta property=\"og:image:width\" content=\"512\" \/>\n\t<meta property=\"og:image:height\" content=\"512\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\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=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/fairdata.systems\/home\/media-and-press\/\",\"url\":\"https:\/\/fairdata.systems\/home\/media-and-press\/\",\"name\":\"Media and Press - FAIR Data Systems\",\"isPartOf\":{\"@id\":\"https:\/\/fairdata.systems\/home\/#website\"},\"datePublished\":\"2022-09-02T14:52:43+00:00\",\"dateModified\":\"2023-03-29T11:59:44+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/fairdata.systems\/home\/media-and-press\/#breadcrumb\"},\"inLanguage\":\"en-CA\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/fairdata.systems\/home\/media-and-press\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/fairdata.systems\/home\/media-and-press\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/fairdata.systems\/home\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Media and Press\"}]},{\"@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":"Media and Press - 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\/media-and-press\/","og_locale":"en_US","og_type":"article","og_title":"Media and Press - FAIR Data Systems","og_description":"[vc_row css=”.vc_custom_1662130185379{padding-top: 50px !important;padding-bottom: 50px !important;background-color: #282828 !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][vc_column css=”.vc_custom_1662129992880{background-image: url(https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/03\/fondo-data-intehration.png?id=1228) !important;background-position: 0 0 !important;background-repeat: repeat !important;}”][vc_row_inner][vc_column_inner width=”1\/3″][vc_tweetmeme share_hashtag=”FAIRData,PressRelease” large_button=”true”][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_custom_heading text=”March 22, 2023 | Joint Press Release with ERN EURO-NMD and FAIR Data Systems”][vc_column_text el_id=”WDO_Pres_2023″]Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or …","og_url":"https:\/\/fairdata.systems\/home\/media-and-press\/","og_site_name":"FAIR Data Systems","article_modified_time":"2023-03-29T11:59:44+00:00","og_image":[{"width":512,"height":512,"url":"https:\/\/fairdata.systems\/home\/wp-content\/uploads\/2022\/05\/cropped-favicon.png","type":"image\/png"}],"twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/fairdata.systems\/home\/media-and-press\/","url":"https:\/\/fairdata.systems\/home\/media-and-press\/","name":"Media and Press - FAIR Data Systems","isPartOf":{"@id":"https:\/\/fairdata.systems\/home\/#website"},"datePublished":"2022-09-02T14:52:43+00:00","dateModified":"2023-03-29T11:59:44+00:00","breadcrumb":{"@id":"https:\/\/fairdata.systems\/home\/media-and-press\/#breadcrumb"},"inLanguage":"en-CA","potentialAction":[{"@type":"ReadAction","target":["https:\/\/fairdata.systems\/home\/media-and-press\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/fairdata.systems\/home\/media-and-press\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/fairdata.systems\/home\/"},{"@type":"ListItem","position":2,"name":"Media and Press"}]},{"@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\/1626","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\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/comments?post=1626"}],"version-history":[{"count":25,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/pages\/1626\/revisions"}],"predecessor-version":[{"id":1659,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/pages\/1626\/revisions\/1659"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/media\/1609"}],"wp:attachment":[{"href":"https:\/\/fairdata.systems\/home\/wp-json\/wp\/v2\/media?parent=1626"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}