{"id":20,"date":"2023-01-18T20:57:00","date_gmt":"2023-01-18T20:57:00","guid":{"rendered":"https:\/\/achdncmeetings.org\/?page_id=20"},"modified":"2024-04-24T19:54:40","modified_gmt":"2024-04-24T19:54:40","slug":"agenda","status":"publish","type":"page","link":"https:\/\/achdncmeetings.org\/agenda\/","title":{"rendered":"Agenda"},"content":{"rendered":"[vc_row type=”in_container” full_screen_row_position=”middle” column_margin=”default” column_direction=”default” column_direction_tablet=”default” column_direction_phone=”default” scene_position=”center” top_padding=”5%” bottom_padding=”3%” text_color=”dark” text_align=”left” row_border_radius=”none” row_border_radius_applies=”bg” overflow=”visible” overlay_strength=”0.3″ gradient_direction=”left_to_right” shape_divider_position=”bottom” bg_image_animation=”none” gradient_type=”default” shape_type=””][vc_column column_padding=”no-extra-padding” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”default” tablet_text_alignment=”default” phone_text_alignment=”default” background_color_opacity=”1″ background_hover_color_opacity=”1″ column_backdrop_filter=”none” column_shadow=”none” column_border_radius=”none” column_link_target=”_self” column_position=”default” gradient_direction=”left_to_right” overlay_strength=”0.3″ width=”1\/1″ tablet_width_inherit=”default” animation_type=”default” bg_image_animation=”none” border_type=”simple” column_border_width=”none” column_border_style=”solid” column_padding_type=”default” gradient_type=”default”][image_with_animation image_url=”11″ image_size=”full” animation_type=”entrance” animation=”None” animation_movement_type=”transform_y” hover_animation=”none” alignment=”center” border_radius=”none” box_shadow=”none” image_loading=”default” max_width=”50%” max_width_mobile=”100%”][vc_column_text]\n

Advisory Committee on Heritable Disorders in Newborns and Children<\/h2>\n

May 9-10, 2024 | In-Person with Virtual Option<\/h3>\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=”in_container” full_screen_row_position=”middle” column_margin=”default” column_direction=”default” column_direction_tablet=”default” column_direction_phone=”default” scene_position=”center” bottom_padding=”5%” text_color=”dark” text_align=”left” row_border_radius=”none” row_border_radius_applies=”bg” overflow=”visible” overlay_strength=”0.3″ gradient_direction=”left_to_right” shape_divider_position=”bottom” bg_image_animation=”none” gradient_type=”default” shape_type=””][vc_column column_padding=”padding-5-percent” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”default” tablet_text_alignment=”default” phone_text_alignment=”default” background_color_opacity=”1″ background_hover_color_opacity=”1″ column_backdrop_filter=”none” column_shadow=”small_depth” column_border_radius=”none” column_link_target=”_self” column_position=”default” gradient_direction=”left_to_right” overlay_strength=”0.3″ width=”1\/1″ tablet_width_inherit=”default” animation_type=”default” bg_image_animation=”none” border_type=”simple” column_border_width=”none” column_border_style=”solid” column_padding_type=”default” gradient_type=”default”][vc_custom_heading text=”Agenda” font_container=”tag:h1|font_size:36|text_align:left|color:%23044a88″ use_theme_fonts=”yes”][divider line_type=”Small Line” line_alignment=”default” line_thickness=”3″ divider_color=”extra-color-1″ animate=”yes” custom_height=”50px” custom_line_width=”50″][vc_column_text css=”.vc_custom_1713981392492{padding-top: 3% !important;padding-right: 3% !important;padding-bottom: 3% !important;padding-left: 3% !important;background-color: #f4f4f4 !important;}”]At the request of the DMD nominators, there will not be a vote for inclusion of Duchenne Muscular Dystrophy to the RUSP during the May meeting. Instead, the Committee will decide during the Thursday DMD agenda time what action to take, such as a vote to postpone a RUSP recommendation to a future meeting.<\/em>[\/vc_column_text][vc_column_text]The meeting is currently scheduled to run Thursday, May 9, 2024, from 10:00 AM to 5:00 PM Eastern Time (ET) and Friday, May 10, 2024, from 10:00 AM to 3:00 PM (ET). A final agenda will be posted no later than 48 hours before the meeting.[\/vc_column_text][vc_custom_heading text=”Thursday, May 9, 2024 from 10:00 AM \u2013 3:45 PM” font_container=”tag:h3|font_size:18|text_align:left|color:%23044a88″ use_theme_fonts=”yes”][vc_column_text](All times shown are in Eastern Time)<\/em>[\/vc_column_text][vc_column_text]\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n
TIME<\/strong><\/td>\nTOPIC<\/strong><\/td>\n<\/tr>\n
10:00 AM \u2013 10:15 AM<\/strong><\/td>\n\n
    \n
  • Welcome <\/strong><\/li>\n
  • Roll Call<\/strong><\/li>\n
  • Opening Remarks<\/strong><\/li>\n
  • Committee Business<\/strong><\/li>\n<\/ul>\n<\/td>\n<\/tr>\n
10:15 AM \u2013 11:00 AM<\/strong><\/td>\nPublic Comments<\/strong><\/td>\n<\/tr>\n
11:00 AM \u2013 11:10 AM<\/strong><\/td>\nBreak<\/strong><\/td>\n<\/tr>\n
11:10 AM \u2013 11:30 AM<\/strong><\/td>\nRegulatory Process for the Review of Drugs for Rare Diseases<\/strong><\/td>\n<\/tr>\n
11:30 AM \u2013 12:00 PM<\/strong><\/td>\nCommittee Discussion<\/strong><\/td>\n<\/tr>\n
12:00 PM \u2013 1:00 PM<\/strong><\/td>\nLunch<\/strong><\/td>\n<\/tr>\n
1:00 PM \u2013 1:30 PM<\/strong><\/td>\nDuchenne Muscular Dystrophy Evidence-Based Review<\/strong>: Update<\/strong><\/td>\n<\/tr>\n
1:30 PM \u2013 1:50 PM<\/strong><\/td>\nCommittee Discussion<\/strong><\/td>\n<\/tr>\n
1:50 PM \u2013 2:00 PM<\/strong><\/td>\nCommittee Liaison Update<\/strong><\/p>\n
    \n
  • Committee Discussion and Vote<\/strong><\/li>\n<\/ul>\n<\/td>\n<\/tr>\n
2:00 PM \u2013 2:20 PM<\/strong><\/td>\nACHDNC Decision Matrix Tool:\u00a0 Public Health System Assessment<\/strong><\/td>\n<\/tr>\n
2:20 PM \u2013 2:45 PM<\/strong><\/td>\nCommittee Discussion<\/strong><\/td>\n<\/tr>\n
2:45 PM \u2013 2:55 PM<\/strong><\/td>\nBreak<\/strong><\/td>\n<\/tr>\n
2:55 PM \u2013 3:10 PM<\/strong><\/td>\nACHDNC Nomination and Evidence Review Process<\/strong><\/td>\n<\/tr>\n
3:10 PM \u2013 3:30 PM<\/strong><\/td>\nCommittee Discussion<\/strong><\/td>\n<\/tr>\n
3:30 PM \u2013 3:45 PM<\/strong><\/td>\nAwards and Acknowledgements<\/strong><\/td>\n<\/tr>\n
3:45 PM<\/strong><\/td>\nEnd Day 1<\/strong><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n[\/vc_column_text][divider line_type=”No Line” custom_height=”5px”][divider line_type=”Full Width Line” line_thickness=”1″ divider_color=”extra-color-3″ custom_height=”75px”][vc_custom_heading text=”Friday, May 10, 2024, from 10:00 AM \u2013 2:00 PM” font_container=”tag:h2|font_size:18|text_align:left|color:%23044a88″ use_theme_fonts=”yes”][vc_column_text](All times shown are in Eastern Time)<\/em>[\/vc_column_text][vc_column_text]\n\n\n\n\n\n\n\n\n\n\n\n\n
TIME<\/strong><\/td>\nTOPIC<\/strong><\/td>\n<\/tr>\n
10:00 AM \u2013 10:15 AM<\/strong><\/td>\n\n
    \n
  • Welcome<\/strong><\/li>\n
  • Roll Call<\/strong><\/li>\n
  • Opening Remarks<\/strong><\/li>\n
  • Committee Business<\/strong><\/li>\n<\/ul>\n<\/td>\n<\/tr>\n
10:15 AM \u2013 10:35 AM<\/strong><\/td>\nQualitative Evidence Synthesis: GRADE-CERQual Approach For Assessing the Confidence in Synthesized Findings<\/strong><\/td>\n<\/tr>\n
10:35 AM \u2013 11:00 AM<\/strong><\/td>\nCommittee Discussion<\/strong><\/td>\n<\/tr>\n
11:00 AM \u2013 11:15 AM<\/strong><\/td>\nOutcomes Research Criteria Update<\/strong><\/td>\n<\/tr>\n
11:15 AM \u2013 11:35 AM<\/strong><\/td>\nCommittee Discussion<\/strong><\/td>\n<\/tr>\n
11:35 AM \u2013 12:30 PM<\/strong><\/td>\nLunch<\/strong><\/td>\n<\/tr>\n
12:30 PM \u2013 1:45 PM<\/strong><\/td>\nNewborn Screening Ad Hoc Topic Groups:\u00a0 Updates and Committee Discussion<\/strong><\/td>\n<\/tr>\n
1:45 PM \u2013 1:55 PM<\/strong><\/td>\nNew Business<\/strong><\/td>\n<\/tr>\n
1:55 PM \u2013 <\/strong>2:00 PM<\/strong><\/td>\nAdjourn<\/strong><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=”in_container” full_screen_row_position=”middle” column_margin=”default” column_direction=”default” column_direction_tablet=”default” column_direction_phone=”default” scene_position=”center” text_color=”dark” text_align=”left” row_border_radius=”none” row_border_radius_applies=”bg” overflow=”visible” overlay_strength=”0.3″ gradient_direction=”left_to_right” shape_divider_position=”bottom” bg_image_animation=”none”][vc_column column_padding=”no-extra-padding” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”default” tablet_text_alignment=”default” phone_text_alignment=”default” background_color_opacity=”1″ background_hover_color_opacity=”1″ column_backdrop_filter=”none” column_shadow=”none” column_border_radius=”none” column_link_target=”_self” column_position=”default” gradient_direction=”left_to_right” overlay_strength=”0.3″ width=”1\/1″ tablet_width_inherit=”default” animation_type=”default” bg_image_animation=”none” border_type=”simple” column_border_width=”none” column_border_style=”solid”][nectar_global_section id=”245″][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"

[vc_row type=”in_container” full_screen_row_position=”middle” column_margin=”default” column_direction=”default” column_direction_tablet=”default” column_direction_phone=”default” scene_position=”center” top_padding=”5%” bottom_padding=”3%” text_color=”dark” text_align=”left” row_border_radius=”none” row_border_radius_applies=”bg” overflow=”visible” overlay_strength=”0.3″ gradient_direction=”left_to_right” shape_divider_position=”bottom” bg_image_animation=”none” gradient_type=”default” shape_type=””][vc_column column_padding=”no-extra-padding” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”default” tablet_text_alignment=”default” phone_text_alignment=”default”…<\/p>\n","protected":false},"author":1,"featured_media":14,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"yoast_head":"\nAgenda - ACHDNC Meetings<\/title>\n<meta name=\"description\" content=\"The meeting is currently scheduled to run Thursday, May 9, 2024, from 10:00 AM to 5:00 PM Eastern Time (ET) and Friday, May 10, 2024, from 10:00 AM to 3:00 PM (ET). A final agenda will be posted no later than 48 hours before the meeting.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/achdncmeetings.org\/agenda\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Agenda - ACHDNC Meetings\" \/>\n<meta property=\"og:description\" content=\"The meeting is currently scheduled to run Thursday, May 9, 2024, from 10:00 AM to 5:00 PM Eastern Time (ET) and Friday, May 10, 2024, from 10:00 AM to 3:00 PM (ET). A final agenda will be posted no later than 48 hours before the meeting.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/achdncmeetings.org\/agenda\/\" \/>\n<meta property=\"og:site_name\" content=\"ACHDNC Meetings\" \/>\n<meta property=\"article:modified_time\" content=\"2024-04-24T19:54:40+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1000\" \/>\n\t<meta property=\"og:image:height\" content=\"1000\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/achdncmeetings.org\/agenda\/\",\"url\":\"https:\/\/achdncmeetings.org\/agenda\/\",\"name\":\"Agenda - ACHDNC Meetings\",\"isPartOf\":{\"@id\":\"https:\/\/achdncmeetings.org\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/achdncmeetings.org\/agenda\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/achdncmeetings.org\/agenda\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png\",\"datePublished\":\"2023-01-18T20:57:00+00:00\",\"dateModified\":\"2024-04-24T19:54:40+00:00\",\"description\":\"The meeting is currently scheduled to run Thursday, May 9, 2024, from 10:00 AM to 5:00 PM Eastern Time (ET) and Friday, May 10, 2024, from 10:00 AM to 3:00 PM (ET). A final agenda will be posted no later than 48 hours before the meeting.\",\"breadcrumb\":{\"@id\":\"https:\/\/achdncmeetings.org\/agenda\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/achdncmeetings.org\/agenda\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/achdncmeetings.org\/agenda\/#primaryimage\",\"url\":\"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png\",\"contentUrl\":\"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png\",\"width\":1000,\"height\":1000},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/achdncmeetings.org\/agenda\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/achdncmeetings.org\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Agenda\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/achdncmeetings.org\/#website\",\"url\":\"https:\/\/achdncmeetings.org\/\",\"name\":\"ACHDNC Meetings\",\"description\":\"February 9-10 | Virtual Meeting\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/achdncmeetings.org\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-US\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Agenda - ACHDNC Meetings","description":"The meeting is currently scheduled to run Thursday, May 9, 2024, from 10:00 AM to 5:00 PM Eastern Time (ET) and Friday, May 10, 2024, from 10:00 AM to 3:00 PM (ET). A final agenda will be posted no later than 48 hours before the meeting.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/achdncmeetings.org\/agenda\/","og_locale":"en_US","og_type":"article","og_title":"Agenda - ACHDNC Meetings","og_description":"The meeting is currently scheduled to run Thursday, May 9, 2024, from 10:00 AM to 5:00 PM Eastern Time (ET) and Friday, May 10, 2024, from 10:00 AM to 3:00 PM (ET). A final agenda will be posted no later than 48 hours before the meeting.","og_url":"https:\/\/achdncmeetings.org\/agenda\/","og_site_name":"ACHDNC Meetings","article_modified_time":"2024-04-24T19:54:40+00:00","og_image":[{"width":1000,"height":1000,"url":"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png","type":"image\/png"}],"twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/achdncmeetings.org\/agenda\/","url":"https:\/\/achdncmeetings.org\/agenda\/","name":"Agenda - ACHDNC Meetings","isPartOf":{"@id":"https:\/\/achdncmeetings.org\/#website"},"primaryImageOfPage":{"@id":"https:\/\/achdncmeetings.org\/agenda\/#primaryimage"},"image":{"@id":"https:\/\/achdncmeetings.org\/agenda\/#primaryimage"},"thumbnailUrl":"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png","datePublished":"2023-01-18T20:57:00+00:00","dateModified":"2024-04-24T19:54:40+00:00","description":"The meeting is currently scheduled to run Thursday, May 9, 2024, from 10:00 AM to 5:00 PM Eastern Time (ET) and Friday, May 10, 2024, from 10:00 AM to 3:00 PM (ET). A final agenda will be posted no later than 48 hours before the meeting.","breadcrumb":{"@id":"https:\/\/achdncmeetings.org\/agenda\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/achdncmeetings.org\/agenda\/"]}]},{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/achdncmeetings.org\/agenda\/#primaryimage","url":"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png","contentUrl":"https:\/\/achdncmeetings.org\/wp-content\/uploads\/2023\/01\/ACHDNC_Logo_1000x1000.png","width":1000,"height":1000},{"@type":"BreadcrumbList","@id":"https:\/\/achdncmeetings.org\/agenda\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/achdncmeetings.org\/"},{"@type":"ListItem","position":2,"name":"Agenda"}]},{"@type":"WebSite","@id":"https:\/\/achdncmeetings.org\/#website","url":"https:\/\/achdncmeetings.org\/","name":"ACHDNC Meetings","description":"February 9-10 | Virtual Meeting","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/achdncmeetings.org\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"en-US"}]}},"_links":{"self":[{"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/pages\/20"}],"collection":[{"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/comments?post=20"}],"version-history":[{"count":62,"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/pages\/20\/revisions"}],"predecessor-version":[{"id":248,"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/pages\/20\/revisions\/248"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/media\/14"}],"wp:attachment":[{"href":"https:\/\/achdncmeetings.org\/wp-json\/wp\/v2\/media?parent=20"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}