{"id":58994,"date":"2019-03-08T14:09:01","date_gmt":"2019-03-08T19:09:01","guid":{"rendered":"https:\/\/rarediseases.org\/nord-iamrare-aps-type-1-patient-registry-launched\/"},"modified":"2019-03-08T14:09:01","modified_gmt":"2019-03-08T19:09:01","slug":"nord-iamrare-aps-type-1-patient-registry-launched","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-iamrare-aps-type-1-patient-registry-launched\/","title":{"rendered":"NORD IAMRARE APS Type 1 Patient Registry Launched"},"content":{"rendered":"

Last week, a NORD Member Organization and IAMRARE\u2122 Registry Client, The APS Type 1 Foundation Inc.,<\/span> officially launched their patient registry, APS Type 1 (APECED) Registry<\/span>.\u00a0NORD\u2019s IAMRARE Registry Program<\/a>\u00a0was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field.\u00a0We are pleased to share the press release that was issued last week by The APS Type1 Foundation to announce the launch of their registry<\/em>.<\/p>\n

\n

New York, NY, February 28, 2019<\/b>\u2014The Board of Directors of The APS Type 1 Foundation Inc. is pleased to announce today\u2019s launch of the first web-based APS Type 1 (APECED) Registry, where patients and their families can input data about their disease at <\/span>https:\/\/apstype1.iamrare.org\/<\/span><\/a>.<\/span><\/p>\n

\u201cThe APS Type 1 Registry will provide a complete picture of each patient\u2019s experience,\u201d said APS Type 1 Foundation Board Member, Jennifer Orange. \u201cWe are launching this initiative to provide much needed patient data to medical researchers in order to help earlier diagnosis, enhance patient quality of life and discover a cure for this and other autoimmune diseases.”<\/span><\/p>\n

The APS Type 1 Registry, The APS Type 1 Foundation\u2019s web site (<\/span>www.apstype1.org<\/span><\/a>), as well as print, TV, radio and social media campaigns will help our community grow, and share our knowledge with both patients and scientists as we support new discoveries. Participation is especially vital given the rarity of APS Type 1. <\/span><\/p>\n

The APS Type 1 Registry is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians, can enter information at <\/span>https:\/\/apstype1.iamrare.org\/<\/span><\/a> from anywhere. \u00a0The data is made anonymous and stored securely in an online portal called a registry.<\/span><\/p>\n

The APS Type 1 Foundation is launching the study in collaboration with the National Organization for Rare Disorders (NORD), an independent charity that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. Funding is supported by a cooperative agreement between NORD and the U.S. Food and Drug Administration (FDA). \u00a0<\/span>The FDA has praised NORD\u2019s program as a helpful tool \u201cthat protects the security and privacy of personal information, while making valuable information available to a researcher or drug developer interested in creating a new therapy for a rare disease.\u201d<\/span><\/p>\n

NORD President and CEO Peter L. Saltonstall said, \u201cNORD\u2019s natural history studies platform empowers patients and families to drive research and eliminate some of the unknowns that still exist in rare diseases. \u00a0We are glad to be working with our Member Organization on this project and thank the FDA for its support and ongoing commitment to help people with rare diseases.\u201d<\/span><\/p>\n

    \n
  1. Woodcock, J. \u201cThe more we know about rare diseases, the more likely we are to find safe and effective treatments.\u201d <\/span>FDAVoice<\/span><\/i> (Oct. 23, 2014)<\/span><\/li>\n<\/ol>\n

    ###<\/span><\/p>\n

    About The APS Type 1 Foundation<\/b><\/p>\n

    The APS Type 1 Foundation Inc., a 501(c)(3) organization, was established in 2014 in New York to promote education, awareness, and research in Autoimmune Polyglandular Syndrome Type 1 (APS Type 1 or APECED). The Foundation sponsors research through NORD\u2019s directed grants, organizes a bi-annual International Symposium on APS Type 1 and supports a growing community through its website (<\/span>www.apstype1.org<\/span><\/a>).<\/span><\/p>\n

    Contact: \u00a0Jennifer Orange, [Jennifer.orange@apstype1.org], 416-409-9139<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

    Last week, a NORD Member Organization and IAMRARE\u2122 Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) Registry.\u00a0NORD\u2019s IAMRARE Registry Program\u00a0was built … <\/p>\n

    Continue reading “NORD IAMRARE APS Type 1 Patient Registry Launched”<\/span><\/a><\/p>\n","protected":false},"author":47,"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":[190,504,193],"tags":[1877,1069,1878,1880,925,1879,1754,243],"class_list":["post-58994","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-press-releases","category-research","tag-aps-type-1","tag-aps-type-1-foundation","tag-iamrare-patient-registry","tag-jennifer-orange","tag-natural-history-studies","tag-patient-powered","tag-patient-registry","tag-peter-l-saltonstall"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58994","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58994"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58994\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58994"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58994"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58994"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}