{"id":1321,"date":"2023-08-10T15:23:54","date_gmt":"2023-08-10T15:23:54","guid":{"rendered":"https:\/\/pediatricbrainfoundation.org\/archive\/accelerating-therapeutic-development-pediatric-neurological-disorders-establishing\/"},"modified":"2023-08-10T15:23:54","modified_gmt":"2023-08-10T15:23:54","slug":"accelerating-therapeutic-development-pediatric-neurological-disorders-establishing","status":"publish","type":"page","link":"https:\/\/pediatricbrainfoundation.org\/archive\/accelerating-therapeutic-development-pediatric-neurological-disorders-establishing\/","title":{"rendered":"Accelerating Therapeutic Development for Pediatric Neurological Disorders: Establishing Clinical Centers of Excellence"},"content":{"rendered":"<div class=\"row-fluid\">\n<section class=\"span12\">\n<div class=\"back-link\"><a href=\"https:\/\/pediatricbrainfoundation.org\/archive\/work\/workshops\/\">\u00ab Back to Workshops<\/a><\/div>\n<\/section><\/div>\n<div class=\"row-fluid\">\n<section class=\"content-top span12\">\n      <a id=\"main-content\"><\/a><\/p>\n<h1 class=\"page-header\">Accelerating Therapeutic Development for Pediatric Neurological Disorders: Establishing Clinical Centers of Excellence<\/h1>\n<\/section><\/div>\n<div class=\"row-fluid\">\n<section class=\"main-content span9\">\n<section id=\"block-system-main\" class=\"block-system block-page-content clearfix\">\n<div class=\"section-in\">\n<div class=\"section-inn\">\n<div class=\"section-innn\">\n<article id=\"node-5728\" class=\"node node-project clearfix\">\n  <!--\nTHIS FILE IS NOT USED AND IS HERE AS A STARTING POINT FOR CUSTOMIZATION ONLY.\nSee http:\/\/api.drupal.org\/api\/function\/theme_field\/7 for details.\nAfter copying this file to your theme's folder and customizing it, remove this\nHTML comment.\n--><\/p>\n<div id=\"body\" class=\"field field-name-body field-type-text-with-summary field-label-hidden prose\">\n<div class=\"field-items\">\n<div class=\"field-item even\">\n<p class=\"tkgyxz44ddvou8s4e\">\n<p class=\"tkgyxz44ddvou8s4e\">\n<p class=\"tkgyxz44ddvou8s4e\"><b>Date: \u00a0<\/b>July 15-16, 2010<\/p>\n<p class=\"tkgyxz44ddvou8s4e\"><b>Subject:\u00a0<\/b> <i>Accelerating Therapeutic Development for Pediatric Neurological Disorders: Establishing Clinical Centers of Excellence<\/i><\/p>\n<p class=\"tkgyxz44ddvou8s4e\"><b>Location:<\/b> \u00a0Washington, D.C.<\/p>\n<p class=\"tkgyxz44ddvou8s4e\"><b style=\"line-height: 1.45em;\">Co-Chairs:<\/b><span style=\"line-height: 1.45em;\">\u00a0\u00a0<\/span><\/p>\n<p class=\"tkgyxz44ddvou8s4e\">\n<ul>\n<li><span style=\"line-height: 1.45em;\">Brad Margus, CEO, Envoy Therapeutics and Volunteer President, and Co-Founder, A-T Children\u2019s Project<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">Dr. William Mobley, Chair, Department of Neurosciences, School of Medicine, University of California at San Diego\u00a0<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">Dr. Evan Snyder, Program Director, Professor Stem Cells and Regenerative Biology, Sanford-Burnham Medical Research Institute<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<\/ul>\n<p class=\"tkgyxz44ddvou8s4e\">\n<p class=\"tkgyxz44ddvou8s4e\"><b>Attendees: \u00a0<\/b>Pediatric neurologists, scientists, pharmaceutical executives, venture capitalists, leaders of disease-specific nonprofit organizations as well as representatives of the Food and Drug Administration and the National Institute of Neurological Disorders and Stroke.<\/p>\n<p class=\"tkgyxz44ddvou8s4e\"><b>Recap: \u00a0<\/b><span style=\"line-height: 1.45em;\">On July 15 &#038; 16, 2010, Pediatric Brain Foundation hosted a symposium in Washington D.C. that brought together policy makers, researchers, non-profit organizations, and industry to address the barriers to clinical trials and treatments for children affected by neurological conditions. \u00a0The meeting, <\/span><i style=\"line-height: 1.45em;\">Accelerating Therapeutic Development for Pediatric Neurological Disorders: Establishing Clinical Centers of Excellence<\/i><span style=\"line-height: 1.45em;\">, had a primary goal of fully fleshing out the feasibility and details of creating a network of locations throughout the United States that would ultimately be able to coordinate, plan and execute pediatric brain studies and then share the results to an alliance of physicians, scientists, health care providers, federal agencies, industry and patient advocates. \u00a0<\/span><\/p>\n<p class=\"tkgyxz44ddvou8s4e\">\n<p class=\"tkgyxz44ddvou8s4e\">Event co-chairs, Brad Margus (CEO, Envoy Therapeutics and Volunteer President and Co-Founder, A-T Children\u2019s Project), Dr. William Mobley (Chair, Department of Neurosciences at the University of California, San Diego School of Medicine) and Dr. Evan Snyder (Program Director, Professor Stem Cells and Regenerative Biology, Sanford\/Burnham Institute), facilitated the discussions and provided focus and direction throughout the two days.\u00a0<\/p>\n<p class=\"tkgyxz44ddvou8s4e\">The list of attendees was stellar. Thirty people representing various stakeholders attended and contributed a diversity of points of view. \u00a0Top staff members from NINDS and from FDA participated, as well prominent researchers and pediatric neurologists. \u00a0Several Executive Directors and key staff from non-profit groups were there, including: \u00a0Citizens United for Research in Epilepsy (CURE), R.A.R.E. Project, National Tay Sachs &#038; Allied Diseases, A-T Children\u2019s Project, Faster Cures\/The Center for Accelerating Medical Solutions and National Down Syndrome Society. \u00a0 In addition, corporate executives from Pfizer, Athersys, and StemCells Inc. and venture capitalists rounded out the group. \u00a0<\/p>\n<p class=\"tkgyxz44ddvou8s4e\"><i>&#8220;We went from the Valley of Death, to a Mountain of Hope.\u201d -Dr. William Mobley<\/i><\/p>\n<p class=\"tkgyxz44ddvou8s4e\">CNS Foundation is working on the extensive follow-up and coordinating the efforts of the Co-Chairs in getting the Centers of Excellence for Pediatric Neurological Disorders off the ground. \u00a0Although the details are still being hammered out, it is proposed that the network be organized and managed under several Centers of Excellence. \u00a0A hub and spokes model would establish a highly organized trials network populated by academic Child Neurologists across the United States. \u00a0<\/p>\n<p class=\"tkgyxz44ddvou8s4e\">The network would also be charged with:<\/p>\n<p class=\"tkgyxz44ddvou8s4e\">\n<ul>\n<li><span style=\"line-height: 1.45em;\">Providing training for Child Neurologists and their physician and nurse colleagues in clinical trial design management, and interpretation<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">Exploiting existing infrastructure for clinical trials design, execution, and, evaluation<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">Where needed, creating such an infrastructure<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">Evaluating emerging basic science discoveries as potential treatments<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">With colleagues at the FDA and industry, assessing the feasibility of developing discoveries into drugs or other therapeutic modalities<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">Enlisting international partnership as necessary to advance the mission<\/span><br class=\"tkgyxz44ddvou8s4e\"\/><\/li>\n<li><span style=\"line-height: 1.45em;\">Communicating the results of studies to colleagues and to patients and their advocates, including assembling a searchable accessible database<\/span><\/li>\n<\/ul>\n<p class=\"tkgyxz44ddvou8s4e\">\n<p class=\"tkgyxz44ddvou8s4e\">\n<\/div><\/div>\n<\/div>\n<\/article>\n<p> <!-- \/.node -->\n<\/div>\n<\/div>\n<\/div>\n<\/section>\n<p> <!-- \/.block --><br \/>\n      <\/section>\n<aside class=\"span3 hidden-phone\" role=\"complementary\">\n<div class=\"region region-sidebar-second\">\n<section id=\"block-views-project-fields-block-4\" class=\"block block-views clearfix\">\n<div class=\"section-in\">\n<div class=\"section-inn\">\n<div class=\"section-innn\">\n<h4 class=\"block-title clearfix\">CNS Contributors<\/h4>\n<div class=\"view view-project-fields view-id-project_fields view-display-id-block_4 view-dom-id-f3fe8ff59cc941fefeff4bb7fea4d965\">\n<div class=\"view-content\">\n<div class=\"item-list\">\n<ul>\n<li class=\"views-row views-row-1 views-row-odd views-row-first\">\n<div class=\"views-field views-field-field-cns-contributors-link\">\n<div class=\"field-content\"><a href=\"http:\/\/www.atcp.org\/\" target=\"_blank\" rel=\"noopener\">Brad Margus, Volunteer President &#038; Co-Founder, A-T Children\u2019s Project<\/a><\/div>\n<\/p><\/div>\n<\/li>\n<li class=\"views-row views-row-2 views-row-even\">\n<div class=\"views-field views-field-field-cns-contributors-link\">\n<div class=\"field-content\">Dr. William Mobley, MD, PhD; Professor &#038; Chair, Dept of Neurosciences, University of California, San Diego School of Medicine<\/div>\n<\/p><\/div>\n<\/li>\n<li class=\"views-row views-row-3 views-row-odd views-row-last\">\n<div class=\"views-field views-field-field-cns-contributors-link\">\n<div class=\"field-content\">Dr. Evan Snyder, MD, PhD; Director &#038; Professor of Stem Cells &#038; Regenerative Biology, Sanford-Burnham Medical Research Institute<\/div>\n<\/p><\/div>\n<\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/section>\n<p> <!-- \/.block --><\/p>\n<section id=\"block-views-project-fields-block-2\" class=\"block block-views clearfix\">\n<div class=\"section-in\">\n<div class=\"section-inn\">\n<div class=\"section-innn\">\n<h4 class=\"block-title clearfix\">Established<\/h4>\n<div class=\"view view-project-fields view-id-project_fields view-display-id-block_2 view-dom-id-3a3026b1d24f4762c818d50b7459c74c\">\n<div class=\"view-content\">\n<div class=\"item-list\">\n<ul>\n<li class=\"views-row views-row-1 views-row-odd views-row-first views-row-last\">\n<div class=\"views-field views-field-field-project-established\">\n<div class=\"field-content\">2010<\/div>\n<\/p><\/div>\n<\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/section>\n<p> <!-- \/.block --><\/p>\n<section id=\"block-views-project-fields-block-3\" class=\"block block-views clearfix\">\n<div class=\"section-in\">\n<div class=\"section-inn\">\n<div class=\"section-innn\">\n<h4 class=\"block-title clearfix\">Project Highlights<\/h4>\n<div class=\"view view-project-fields view-id-project_fields view-display-id-block_3 view-dom-id-b872e16cbf6e867da0704a892b5e8638\">\n<div class=\"view-content\">\n<div class=\"item-list\">\n<ul>\n<li class=\"views-row views-row-1 views-row-odd views-row-first\">\n<div class=\"views-field views-field-field-project-highlights\">\n<div class=\"field-content\">Participants represented the scientific community, nonprofit organizations, patient advocate groups, pharmaceutical and biotech industry, and government institutions.<\/div>\n<\/p><\/div>\n<\/li>\n<li class=\"views-row views-row-2 views-row-even\">\n<div class=\"views-field views-field-field-project-highlights\">\n<div class=\"field-content\">As a result of this workshop, the NINDS included language specific to pediatric neurology in an RFA focused on establishing centers of excellence.<\/div>\n<\/p><\/div>\n<\/li>\n<li class=\"views-row views-row-3 views-row-odd views-row-last\">\n<div class=\"views-field views-field-field-project-highlights\">\n<div class=\"field-content\">Opportunity for nonprofits and patient advocacy groups to get face time in front of scientists, pharmaceutical and biotech representatives.<\/div>\n<\/p><\/div>\n<\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/section>\n<p> <!-- \/.block -->\n  <\/div>\n<\/aside>\n<p>  <!-- \/#sidebar-second -->\n  <\/div>\n","protected":false,"raw":""},"excerpt":{"rendered":"<p>\u00ab Back to Workshops Accelerating Therapeutic Development for Pediatric [&hellip;]<\/p>\n","protected":false},"author":0,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"template_2.php","meta":{"footnotes":""},"class_list":["post-1321","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v18.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Accelerating Therapeutic Development for Pediatric Neurological Disorders: Establishing Clinical Centers of Excellence | Pediatric Brain Foundation<\/title>\n<meta name=\"description\" content=\"Children&#039;s Neurobiological Solutions-Dedicated to Accelerating Medical Research for Pediatric Brain Repair and Regeneration. 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