{"id":59273,"date":"2021-04-22T15:30:28","date_gmt":"2021-04-22T19:30:28","guid":{"rendered":"https:\/\/rarediseases.org\/cdisc-and-nord-partner-to-develop-data-standards-for-rare-diseases\/"},"modified":"2021-04-22T15:30:28","modified_gmt":"2021-04-22T19:30:28","slug":"cdisc-and-nord-partner-to-develop-data-standards-for-rare-diseases","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/cdisc-and-nord-partner-to-develop-data-standards-for-rare-diseases\/","title":{"rendered":"CDISC and NORD Partner to Develop Data Standards for Rare Diseases"},"content":{"rendered":"<p><strong>Danbury, CT and Austin, TX \u2013 April 22, 2021 \u2013 <\/strong>CDISC and the National Organization for Rare Disorders (NORD<sup>\u00ae<\/sup>) have announced a partnership to develop global data standards for rare diseases. The data standards will be released in a\u00a0<a href=\"https:\/\/www.cdisc.org\/standards\/therapeutic-areas\" rel=\"nofollow noopener\" target=\"_blank\">Therapeutic Area User Guide<\/a> that will be available at no cost on the CDISC website for researchers to leverage in studies to maximize data\u2019s full potential.<\/p>\n<p>According to the FDA, any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States is considered rare. There are approximately 7,000 rare diseases and it\u2019s estimated that 25-30 million Americans have rare diseases. More than 90% of rare diseases have no FDA-approved treatment. Globally, it is estimated that 350 million individuals are impacted by a rare disease.<\/p>\n<p>Therapeutic Area User Guides provide examples and guidance on implementing CDISC standards so that data can be structured effectively and easily analyzed. CDISC Standards drive operational efficiencies within the organizations that use them, expedite the regulatory review process and reduce time to market for treatments developed based on patient data.<\/p>\n<p>\u201cWe are grateful for the opportunity to work with NORD on this much-needed initiative,\u201d said Dave Evans, CDISC President and CEO. \u201cNORD\u2019s support and partnership will allow CDISC to develop standards that facilitate more powerful research, enabling the discovery of new treatments to help patients.\u201d<\/p>\n<p>\u201cWe have seen through NORD\u2019s IAMRARE\u00ae registry platform the immense value of patient-powered research to serve as a catalyst for the development of rare disease treatments,\u201d said Pamela Gavin, NORD Executive Vice-President and COO.\u00a0 \u201cWe believe that by partnering with CDISC, we can help set global data standards that will lead to greater participation in research and fuel a new era of patient-centered innovation.\u201d<\/p>\n<p>To date, CDISC has developed Therapeutic Area User Guides for over 40 disease areas.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Danbury, CT and Austin, TX \u2013 April 22, 2021 \u2013 CDISC and the National Organization for Rare Disorders (NORD\u00ae) have announced a partnership to develop global data standards for rare &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/cdisc-and-nord-partner-to-develop-data-standards-for-rare-diseases\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;CDISC and NORD Partner to Develop Data Standards for Rare Diseases&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[191,504,193],"tags":[],"class_list":["post-59273","post","type-post","status-publish","format-standard","hentry","category-medical","category-press-releases","category-research"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59273","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59273"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59273\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59273"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59273"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59273"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}