{"id":14798,"date":"2020-08-21T15:02:29","date_gmt":"2020-08-21T15:02:29","guid":{"rendered":"https:\/\/www.ataxia.org\/?page_id=14798"},"modified":"2025-03-20T15:18:38","modified_gmt":"2025-03-20T20:18:38","slug":"ataxiapfdd","status":"publish","type":"page","link":"https:\/\/www.ataxia.org\/ataxiapfdd\/","title":{"rendered":"AtaxiaPFDD"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"14798\" class=\"elementor elementor-14798\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-37e2e56 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"37e2e56\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-20506fe\" data-id=\"20506fe\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-6192bce elementor-widget elementor-widget-spacer\" data-id=\"6192bce\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2dcddf9 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2dcddf9\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-962d50b\" data-id=\"962d50b\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-6ad747a\" data-id=\"6ad747a\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-9fb7245 elementor-widget elementor-widget-text-editor\" data-id=\"9fb7245\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div id=\"downloads\"><h1>Externally-Led Patient-Focused Drug Development Meeting on Ataxia<\/h1><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-0c7ffd8\" data-id=\"0c7ffd8\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-06c4341 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"06c4341\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-5b95636\" data-id=\"5b95636\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5e42082 elementor-widget elementor-widget-text-editor\" data-id=\"5e42082\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>This is a recording of the meeting that was streamed live on September 25, 2020.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5ecd86e elementor-widget elementor-widget-video\" data-id=\"5ecd86e\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/QyqgaNEnug8&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-d217b50 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d217b50\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-09e4c0c\" data-id=\"09e4c0c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5ddd830 elementor-widget elementor-widget-spacer\" data-id=\"5ddd830\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-88a6f8f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"88a6f8f\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-19ec274\" data-id=\"19ec274\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-8a76ba3\" data-id=\"8a76ba3\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-77f767b elementor-widget elementor-widget-heading\" data-id=\"77f767b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Voice of the Patient Report<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-225800e elementor-widget elementor-widget-text-editor\" data-id=\"225800e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>The Voice of the <strong><a href=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/03\/Final_NAF-CureDRPLA-VoP-report.pdf\"><span style=\"text-decoration: underline;\">Patient Report for Polyglutamine Ataxias and DRPLA<\/span> <\/a><\/strong> is now available to\u00a0download. This report summarizes information from the Externally Led Patient-Focused Drug Development (EL-PFDD) meeting. It is a comprehensive document created from the feedback gathered at the meeting. It was submitted to the FDA. Future applications for therapy approvals will use the report as a reference when evaluating the effectiveness of the treatment.\u00a0<\/p><p>We would like to offer our thanks to the patient panelists, phone callers, and individuals who submitted email comments. You bravely shared your experiences with symptoms in your daily lives. With your input, we were able to document the significant physical and emotional impact for people living with Ataxia and hopes for future treatments. We heard directly from people living with Ataxia about their struggles with coordination, walking, speech, swallowing, and tremors. This information was included in the Voice of the Patient report. It will help key stakeholders understand what people living with Ataxia want from future treatments and clinical trials. It will ensure that the concerns of patients are taken into account.<\/p><p>We appreciate the efforts of the Ataxia community in making this a successful meeting!<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-10fa590 elementor-align-center elementor-widget elementor-widget-button\" data-id=\"10fa590\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/03\/Final_NAF-CureDRPLA-VoP-report.pdf\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Download Report<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a53e3fc elementor-widget elementor-widget-spacer\" data-id=\"a53e3fc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-31c2d54\" data-id=\"31c2d54\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-d021bee elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d021bee\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-6c88d0f\" data-id=\"6c88d0f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-9bbd784\" data-id=\"9bbd784\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-b4a0c68 elementor-widget elementor-widget-heading\" data-id=\"b4a0c68\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">What is an Externally-Led Patient-Focused Drug Development Meeting?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-653cf69 elementor-widget elementor-widget-text-editor\" data-id=\"653cf69\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>An\u00a0<span style=\"text-decoration: underline;\"><strong><a href=\"https:\/\/www.fda.gov\/industry\/prescription-drug-user-fee-amendments\/externally-led-patient-focused-drug-development-meetings\" target=\"_blank\" rel=\"noopener\">Externally-Led Patient-Focused Drug Development<\/a><\/strong><\/span>\u00a0(EL-PFDD) meeting gives the FDA and other key stakeholders, including medical product developers, health care providers, and federal partners an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients\u2019 daily lives, and patients\u2019 experiences with currently available treatments. This input can inform FDA\u2019s decisions and oversight both during drug development and during review of a marketing application. EL-PFDD meetings strengthen understanding of disease and treatment burden. They also raise awareness and channel engagement within the patient community. This engagement can help lead to approval of new treatments in the future.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6157fd6 elementor-blockquote--skin-border elementor-widget elementor-widget-blockquote\" data-id=\"6157fd6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"blockquote.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<blockquote class=\"elementor-blockquote\">\n\t\t\t<p class=\"elementor-blockquote__content\">\n\t\t\t\t\"Benefit-risk assessment is the foundation for FDA\u2019s regulatory review of human drugs and biologics; input from PFDD meetings can provide important data obtained directly from patients and caregivers.\"\t\t\t<\/p>\n\t\t\t\t\t\t\t<div class=\"e-q-footer\">\n\t\t\t\t\t\t\t\t\t\t\t<cite class=\"elementor-blockquote__author\">FDA Law Blog<\/cite>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/blockquote>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-137cfa2 elementor-widget elementor-widget-spacer\" data-id=\"137cfa2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0979e0f elementor-widget elementor-widget-heading\" data-id=\"0979e0f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">What Happens Next?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5d82708 elementor-widget elementor-widget-text-editor\" data-id=\"5d82708\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><a href=\"https:\/\/www.fda.gov\/industry\/prescription-drug-user-fee-amendments\/voice-patient-series-reports-fdas-patient-focused-drug-development-initiative\" target=\"_blank\" rel=\"noopener\">The Voice\u00a0of the Patient Report<\/a> is a comprehensive document created from the feedback gathered at the meeting. It will be submitted to the FDA. Future applications for therapy approvals will use the report as a reference when evaluating the effectiveness of the treatment. The Voice of the Patient Report for Polyglutamine Ataxias and DRPLA will be published on this page as soon as it is available.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-c8dac93\" data-id=\"c8dac93\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-eeab1ff elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"eeab1ff\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-7a39586\" data-id=\"7a39586\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-82e9c62\" data-id=\"82e9c62\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-af3da7e elementor-widget elementor-widget-spacer\" data-id=\"af3da7e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b10b29a elementor-widget elementor-widget-heading\" data-id=\"b10b29a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Resources<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ee881ee elementor-widget elementor-widget-text-editor\" data-id=\"ee881ee\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul><li>\u00a0<a href=\"https:\/\/www.fda.gov\/industry\/prescription-drug-user-fee-amendments\/externally-led-patient-focused-drug-development-meetings\" target=\"_blank\" rel=\"noopener\">Externally-Led Patient-Focused Drug Development Meetings<\/a> &#8211; U.S. Food &amp; Drug Administration<\/li><li><a href=\"https:\/\/www.fda.gov\/industry\/prescription-drug-user-fee-amendments\/voice-patient-series-reports-fdas-patient-focused-drug-development-initiative\" target=\"_blank\" rel=\"noopener\">The Voice of the Patient: A Series of Reports from FDA&#8217;s Patient-Focused Drug Development Initiative<\/a> &#8211; U.S. Food &amp; Drug Administration<\/li><li><a href=\"https:\/\/www.fdalawblog.net\/2020\/12\/fda-credits-recent-drug-approval-to-patient-community-engagement-we-applaud-the-agency-for-the-recognition-and-its-legacy-of-pfdd\/\" target=\"_blank\" rel=\"noopener\">FDA Credits Recent Drug Approval to Patient Community Engagement; We Applaud the Agency for the Recognition of Its Legacy of PFDD<\/a> &#8211; FDA Law Blog<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-d7e1525\" data-id=\"d7e1525\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Externally-Led Patient-Focused Drug Development Meeting on Ataxia This is a recording of the meeting that was streamed live on September 25, 2020.\u00a0 https:\/\/youtu.be\/QyqgaNEnug8 Voice of the Patient Report The Voice <a class=\"MoreInfo\" href=\"https:\/\/www.ataxia.org\/ataxiapfdd\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"page-templates\/fullwidthpage.php","meta":{"footnotes":""},"class_list":["post-14798","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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