{"id":280774,"date":"2025-08-25T12:00:44","date_gmt":"2025-08-25T16:00:44","guid":{"rendered":"https:\/\/rarediseases.org\/?p=280774"},"modified":"2025-12-02T15:52:46","modified_gmt":"2025-12-02T20:52:46","slug":"nord-unveils-data-literacy-course","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-unveils-data-literacy-course\/","title":{"rendered":"NORD Unveils New, Free Data Literacy Course"},"content":{"rendered":"<p style=\"text-align: center;\"><em>&#8220;From Records to Research\u201d empowers patients, caregivers to take control of their health<\/em><\/p>\n<p>The National Organization for Rare Disorders (NORD<sup>\u00ae<\/sup>), the leading national nonprofit serving more than 30 million Americans with rare diseases, today launched a <a href=\"https:\/\/learn.rarediseases.org\/courses\/from-records-to-research-making-sense-of-health-data-for-rare-diseases\/\"><strong>free, online data literacy course<\/strong><\/a> designed to boost data literacy among patients and caregivers. Tailored for those affected by rare diseases, the course empowers patients and caregivers to make informed decisions, advocate effectively, better communicate with health care providers, and engage more meaningfully in research.<\/p>\n<p>This self-paced, mobile-friendly course, entitled \u201cFrom Records to Research: Making Sense of Health Data for Rare Diseases,\u201d was created in partnership with Critical Path Institute (C-Path) and the Food and Drug Administration (FDA) and is now available on <strong><a href=\"https:\/\/learn.rarediseases.org\/\" target=\"_blank\" rel=\"noopener\">NORD<sup>\u00ae<\/sup> RareEDU<sup>\u00ae<\/sup><\/a><\/strong>, NORD\u2019s online learning platform.<\/p>\n<p>Building data literacy will help rare disease patient advocates champion urgently needed funding, shape policy, and ensure research addresses the real needs of their communities \u2013 all critical to driving scientific innovation.<\/p>\n<p>\u201cPatients and caregivers in the rare disease community are constantly navigating overwhelming amounts of medical information while managing complex, often misunderstood conditions,\u201d said Rebecca Aune, NORD Director of Education Programs. \u201cWith NORD\u2019s new data literacy course, patients and their families will be able to make smart decisions regarding participation in research, clinical trials, and the management of their health data, leading to better care and advocacy.\u201d<\/p>\n<p><strong>&#8220;From Records to Research\u201d is divided into four modules that give patients and caregivers the tools to better understand and engage with health data:<\/strong><\/p>\n<ul>\n<li><strong>Understanding Clinical Data:<\/strong> An in-depth look at how medical information is collected, the role of electronic health records, key medical terms, and data privacy protections.<\/li>\n<li><strong>Medical Devices and Health Data:<\/strong> Explores how data is shared, the types of medical devices that collect it, and how this information supports diagnosis and treatment.<\/li>\n<li><strong>Research and Health Data:<\/strong> Provides insight into how study design, how scientists collect and analyze data, and what patients should consider before joining a study, including the importance of informed consent.<\/li>\n<li><strong>How Data Becomes Knowledge to Improve Health:<\/strong> Discusses how medical research plays a key role in shaping the care patients receive, the treatments they trust, and the decisions they make about their health.<\/li>\n<\/ul>\n<p>Participants in the course, which will also be translated into Spanish, will receive a certificate upon completion.<\/p>\n<p>As an innovator in education and a leader in advancing research and outcomes, NORD deeply values partnerships that make programs like this possible. Through our collaboration with C-Path and the FDA, and with funding provided by the <strong><a href=\"https:\/\/rarediseases.org\/rdca-dap\/\">Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP<sup>\u00ae<\/sup>)<\/a><\/strong>, an integrated database and analytics hub designed to accelerate drug development, we are advancing the creation of novel solutions that can bring treatments to rare disease patients faster.<\/p>\n<p><strong>Learn more about the \u201cFrom Records to Research\u201d course and enroll today: <a href=\"https:\/\/learn.rarediseases.org\/courses\/from-records-to-research-making-sense-of-health-data-for-rare-diseases\/\" target=\"_blank\" rel=\"noopener\">learn.rarediseases.org\/courses\/from-records-to-research-making-sense-of-health-data-for-rare-diseases\/<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>&#8220;From Records to Research\u201d empowers patients, caregivers to take control of their health The National Organization for Rare Disorders (NORD\u00ae), the leading national nonprofit serving more than 30 million Americans &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-unveils-data-literacy-course\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Unveils New, Free Data Literacy Course&#8221;<\/span><\/a><\/p>\n","protected":false},"author":13,"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":[4311,190,504,2427,4074],"tags":[4357],"class_list":["post-280774","post","type-post","status-publish","format-standard","hentry","category-education","category-featured-news","category-press-releases","category-rdca-dap","category-rdca-dap-partnerships","tag-ran-2025-export"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/280774","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\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=280774"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/280774\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=280774"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=280774"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=280774"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}