{"id":282045,"date":"2025-11-14T10:13:17","date_gmt":"2025-11-14T15:13:17","guid":{"rendered":"https:\/\/rarediseases.org\/?p=282045"},"modified":"2025-11-14T10:34:43","modified_gmt":"2025-11-14T15:34:43","slug":"rdca-dap-rfp-2026","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rdca-dap-rfp-2026\/","title":{"rendered":"NORD Launches New RFP for Patient Registries"},"content":{"rendered":"<p style=\"text-align: center;\"><em>Implementation of two new patient registries on the IAMRARE<sup>\u00ae<\/sup> platform funded by RDCA-DAP<sup>\u00ae<\/sup><\/em><\/p>\n<p><strong>DANBURY, Conn., Nov. 14, 2025 \u2014 <\/strong>The National Organization for Rare Disorders (NORD<sup>\u00ae<\/sup>), a leading national nonprofit serving more than 30 million Americans with rare diseases, announces a request for proposals (RFP) from nonprofit patient advocacy organizations for the implementation of two new patient registries on the IAMRARE<sup>\u00ae<\/sup> data and research platform.<\/p>\n<p>Funding is made available through the Rare Disease Cures Accelerator \u2013 Data and Analytics Platform (RDCA-DAP<sup>\u00ae<\/sup>), a collaborative agreement with the Critical Path Institute funded by the U.S. Food and Drug Administration (FDA).<\/p>\n<p>Successful applicants will actively work with NORD, beginning in April 2026, to create and launch a patient registry at a discounted annual rate of $5,000 for NORD Member Organizations (due at signing). NORD will build and host the registry site and will provide training to registry sponsors as they establish a registry advisory board, develop a study protocol, build and customize surveys, engage in an Institutional Review Board (IRB) process, and set criteria for the sharing of data collected by the registry.<\/p>\n<p>Successful applicants will meet the following criteria:<\/p>\n<ul>\n<li>501(c)(3) organization representing a community that meets the criteria for designation as a rare disease\n<ul>\n<li>Priority consideration will be given to NORD Member Organizations<\/li>\n<\/ul>\n<\/li>\n<li>Commitment and resources to begin registry work in April 2026 and run a natural history study for a minimum of five years, including:\n<ul>\n<li>At least two staff members (paid or volunteer) with a combined minimum of 20 hours per week to dedicate to the registry<\/li>\n<li>A U.S.-based Principal Investigator (PI)<\/li>\n<li>Sufficient financial resources to support annual maintenance fees of approximately $5,000 per year (this cost is estimated and may change based on levels of support)<\/li>\n<\/ul>\n<\/li>\n<li>Commitment to the submission of data generated by the registry to the RDCA-DAP<\/li>\n<li>Support from rare disease community and experts who will be able to contribute to the design and success of the project, including selecting disease-specific questions and patient engagement and retention<\/li>\n<\/ul>\n<p><strong>How to Apply:<\/strong><br \/>\nThe application period opens on Nov. 15, 2025, at 9 a.m. ET, and closes on Jan. 10, 2026, at 11:59 p.m. ET. Accepted applicants will be notified by Feb. 1, 2026, and implementation will begin in April 2026. <a href=\"https:\/\/forms.cloud.microsoft\/r\/667mZ6ZaXQ\" target=\"_blank\" rel=\"noopener nofollow\"><strong>Apply here.<\/strong><\/a><\/p>\n<p><strong>About IAMRARE<sup>\u00ae<\/sup><\/strong><br \/>\nThe IAMRARE Platform hosts over 45 registries that are sponsored by patient advocacy organizations for the purpose of collecting patient reported data. For more information, visit <strong><a href=\"https:\/\/rarediseases.org\/iamrare-registry-program\/\">rarediseases.org\/iamrare-registry-program.<\/a><\/strong><\/p>\n<p><strong>About the National Organization for Rare Disorders<\/strong><br \/>\nFounded in 1983, the National Organization for Rare Disorders (NORD<sup>\u00ae<\/sup>) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy.<\/p>\n<p><strong>About RDCA-DAP<\/strong><br \/>\nRDCA-DAP is an FDA-sponsored initiative that provides a centralized and standardized infrastructure to support and accelerate rare disease characterization with the goal of accelerating therapy development. For information, visit <strong><a href=\"https:\/\/c-path.org\/programs\/rdca-dap\/\" rel=\"nofollow noopener\" target=\"_blank\">c-path.org\/programs\/rdca-dap.<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Implementation of two new patient registries on the IAMRARE\u00ae platform funded by RDCA-DAP\u00ae DANBURY, Conn., Nov. 14, 2025 \u2014 The National Organization for Rare Disorders (NORD\u00ae), a leading national nonprofit &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/rdca-dap-rfp-2026\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Launches New RFP for Patient Registries&#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":[190,4137,504,4074,2722,193,4138],"tags":[],"class_list":["post-282045","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-partnershipsrdca-dap","category-press-releases","category-rdca-dap-partnerships","category-registries","category-research","category-researchregistries"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/282045","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=282045"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/282045\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=282045"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=282045"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=282045"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}