{"id":59357,"date":"2021-12-17T14:00:31","date_gmt":"2021-12-17T19:00:31","guid":{"rendered":"https:\/\/rarediseases.org\/the-importance-of-patient-voices-and-data-analytics\/"},"modified":"2021-12-17T14:00:31","modified_gmt":"2021-12-17T19:00:31","slug":"the-importance-of-patient-voices-and-data-analytics","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/the-importance-of-patient-voices-and-data-analytics\/","title":{"rendered":"The Importance of Patient Voices and Data Analytics"},"content":{"rendered":"

NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative. <\/span>\u00a0<\/span><\/p>\n

The first video,\u00a0<\/span>What\u00a0is Patient-Focused Drug Development (PFDD)?<\/span><\/i><\/a>,\u00a0provides\u00a0a brief\u00a0explanation of what patient-focused drug development\u00a0is\u00a0and\u00a0<\/span>how the\u00a0patient\u00a0voice is incorporated into regulatory decision making on drug development<\/span>. The second video,\u00a0<\/span>How Will RDCA-DAP\u00ae Support Patient-Focused Drug\u00a0Development?<\/span><\/i><\/a>,\u00a0explains\u00a0how\u00a0the\u00a0RDCA-DAP\u00a0can support PFDD and help to ensure that patient voices are heard in rare disease research.<\/span>\u00a0<\/span><\/p>\n

The video series aims to\u00a0paint\u00a0a\u00a0picture of\u00a0the current research environment and showcase\u00a0how\u00a0patients and caregivers\u00a0can become involved\u00a0in\u00a0and support research that could have life-changing or even life-saving outcomes for families like theirs.\u00a0The videos explain\u00a0how RDCA-DAP can accelerate development of treatments, and how patients and caregivers can support this process by\u00a0joining\u00a0with others to share data in registries and natural history studies.\u00a0<\/span>\u00a0<\/span><\/p>\n

RDCA-DAP\u00ae is fully funded with a federal grant awarded\u00a0to\u00a0the\u00a0<\/span><\/i>Critical Path Institute<\/span><\/i><\/a>.<\/span><\/i>
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NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data … <\/p>\n

Continue reading “The Importance of Patient Voices and Data Analytics”<\/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":[2427,193],"tags":[2304,2036,383],"class_list":["post-59357","post","type-post","status-publish","format-standard","hentry","category-rdca-dap","category-research","tag-pfdd","tag-rdca-dap","tag-research"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59357","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=59357"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59357\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59357"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59357"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59357"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}