{"id":58645,"date":"2015-01-15T17:47:48","date_gmt":"2015-01-15T22:47:48","guid":{"rendered":"https:\/\/rarediseases.org\/registries-for-rare-diseases-involve-the-patient\/"},"modified":"2022-12-01T11:56:54","modified_gmt":"2022-12-01T16:56:54","slug":"registries-for-rare-diseases-involve-the-patient","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/registries-for-rare-diseases-involve-the-patient\/","title":{"rendered":"Registries for Rare Diseases: Involve the Patient"},"content":{"rendered":"<p>In a new <a href=\"https:\/\/www.medscape.com\/viewarticle\/837851\" target=\"_blank\" rel=\"noopener nofollow\">interview<\/a> with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children\u2019s National Medical Center in Washington, D.C. and NORD <a href=\"https:\/\/www.medscape.com\/viewarticle\/837851\" target=\"_blank\" rel=\"noopener nofollow\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-medium wp-image-22344\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/10\/marshall1-300x169.jpg\" alt=\"marshall\" width=\"300\" height=\"169\" \/><\/a>board member, talks about the importance of patient registries for rare diseases, and the role that NORD\u2019s patient registry program has in helping patients and educating doctors.<\/p>\n<p>According to Dr. Summar, registries can accelerate the process of treatment and help\u00a0physicians address the big knowledge gap about what happens in the day-to-day lives of patients. \u00a0By better understanding what is happening with rare disease patients, \u201cwe can develop better therapies by understanding the comorbid conditions and the long-term consequences of rare disease\u2026 \u00a0Try to get your patients with rare diseases enrolled in registries. You will learn more. Your patients will learn more, and it will actually be easier to take care of them. You will have access to information that you might not otherwise have.\u201d<\/p>\n<p>To learn more about or sign up for NORD\u2019s patient registry program, read the FDA blog post\u00a0written by \u00a0Dr. Janet Woodcock, director of the FDA Center for Drug Evaluation and Research, or visit the <a href=\"https:\/\/rarediseases.org\/for-patient-organizations\/ways-partner\/patient-registries\/\" target=\"_blank\" rel=\"noopener\">NORD Registry Platform<\/a> information page.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children\u2019s National Medical Center in Washington, D.C. and NORD board member, talks about the importance &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/registries-for-rare-diseases-involve-the-patient\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Registries for Rare Diseases: Involve the Patient&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":12010,"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":[193],"tags":[244,793,794,795,792,383],"class_list":["post-58645","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-research","tag-fda","tag-janet-woodcock","tag-marshall-summar","tag-medscape","tag-regsitry","tag-research"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58645","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=58645"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58645\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12010"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58645"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58645"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58645"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}