{"id":58995,"date":"2019-03-08T14:14:39","date_gmt":"2019-03-08T19:14:39","guid":{"rendered":"https:\/\/rarediseases.org\/nord-iamrare-gbscidp-patient-registry-launched\/"},"modified":"2019-03-08T14:14:39","modified_gmt":"2019-03-08T19:14:39","slug":"nord-iamrare-gbscidp-patient-registry-launched","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-iamrare-gbscidp-patient-registry-launched\/","title":{"rendered":"NORD IAMRARE GBS|CIDP Patient Registry Launched"},"content":{"rendered":"

Last week, a NORD Member Organization and IAMRARE\u2122 Registry Client, GBSCIDP Foundation,<\/span> officially launched their patient registry, GBS|CIDP Patient\u00a0Registry<\/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 GBS|CIDP Foundation to announce the launch of their registry<\/em>.<\/p>\n

\n

Conshohocken, PA, February 28, 2019\u00a0<\/b>\u2014 GBS|CIDP Foundation International and the National Organization for Rare Disorders today launched <\/span>the largest-ever study to research GBS|CIDP that causes progressive weakness, sensory loss, and may progress to total paralysis. GBS|CIDP currently has no cure.<\/span><\/p>\n

The new study, GBS|CIDP Patient Registry, creates a platform for patients around the world to share information about GBS|CIDP. <\/span>Its purpose is to build an international resource to be used by scientists in future research. <\/span><\/p>\n

According the GBS|CIDP Foundation\u2019s Executive Director Lisa Butler, \u201cBoth conditions and its variants are extremely rare. GBS affects 2 people each year in every 100,000. The prevalence of CIDP is estimated to be as many as 9 in 100,000 individuals.\u201d<\/span><\/p>\n

To help drive awareness and participation, GBS|CIDP Foundation International will deploy a robust multi-media campaign including social media, e-communications, videos and webinars, for patients to learn more about the GBS|CIDP Patient Registry.<\/span><\/p>\n

\u201cOur goal is to enroll as many patients, or their parents or legal guardians, as possible,\u201d said Lisa Butler. \u201cThe success of the registry is dependent upon community participation.\u201d<\/span><\/p>\n

The GBS|CIDP Patient Registry <\/span>is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. \u00a0Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is made anonymous and stored securely in an online portal called a registry. GBS|CIDP Foundation International may share the data with individuals or institutions conducting research or clinical trials, as approved by the study\u2019s governing board that includes scientists, doctors and patient advocates.<\/span><\/p>\n

The GBS|CIDP Foundation International 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. <\/span>The GBS|CIDP Foundation International is a member of NORD and the organizations work together to eliminate the challenges that rare disease patients face. <\/span><\/p>\n

\u201cPatient-powered registries are changing the landscape of rare disease research,\u201d said Vanessa Boulanger, NORD\u2019s Director of Research Programs. \u201cBy building strong partnerships within the community and with leading scientific experts, NORD\u2019s Registry Program is well-positioned to address knowledge gaps and accelerate the development of discoveries that save lives. We are so pleased to welcome GBS|CIDP Foundation International, as a partner in our IAMRARE<\/span>TM <\/span>Registry Community!\u201d<\/span><\/p>\n

For more information, visit <\/span>gbs-cidp.iamrare.org<\/span><\/a>.<\/span><\/p>\n

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

About GBS|CIDP Foundation International<\/b><\/p>\n

The GBS | CIDP Foundation International is a global nonprofit organization supporting individuals and their families affected by Guillain-Barre\u2019 syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related conditions through a commitment to support, education, research and advocacy.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Last week, a NORD Member Organization and IAMRARE\u2122 Registry Client, GBSCIDP Foundation, officially launched their patient registry, GBS|CIDP Patient\u00a0Registry.\u00a0NORD\u2019s IAMRARE Registry Program\u00a0was built to address the special needs of those … <\/p>\n

Continue reading “NORD IAMRARE GBS|CIDP Patient Registry Launched”<\/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":[190,504,193],"tags":[1579,1881,1572,1470,1878,1882,925,1754,1386],"class_list":["post-58995","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-press-releases","category-research","tag-cidp","tag-cidp-foundation","tag-gbs","tag-iamrare","tag-iamrare-patient-registry","tag-lisa-butler","tag-natural-history-studies","tag-patient-registry","tag-vanessa-boulanger"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58995","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=58995"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58995\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58995"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58995"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58995"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}