{"id":2827,"date":"2020-11-21T19:03:52","date_gmt":"2020-11-22T03:03:52","guid":{"rendered":"http:\/\/wishesforelliott.flywheelsites.com\/?page_id=2827"},"modified":"2024-10-25T08:59:23","modified_gmt":"2024-10-25T15:59:23","slug":"inchstone-project","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/fr\/inchstone-project\/","title":{"rendered":"Le projet Inchstone"},"content":{"rendered":"<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/Inchstone-Horiz-FullColor.jpg\" alt=\"The Inchstone Project\" itemprop=\"image\" height=\"287\" width=\"1407\" title=\"Inchstone-Horiz-FullColor\" onerror=\"this.style.display='none'\"  \/>\n<h2>\n\t\tDes mesures pr\u00e9cises pour les personnes gravement touch\u00e9es par l&#039;\u00e9pilepsie\n\t<\/h2>\n\t<meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Call-to-Action.mp4\" \/><div style=\"width: 640px;\" class=\"wp-video\"><video muted class=\"wp-video-shortcode\" id=\"video-2827-1\" width=\"640\" height=\"360\" autoplay preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Call-to-Action.mp4?_=1\" \/><a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Call-to-Action.mp4\">https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Call-to-Action.mp4<\/a><\/video><\/div>\n\t<p>Countless new targeted or gene-based therapies are nearing trials which could be jeopardized by the absence of tools to capture small but significant improvements in populations who routinely fall 3-5 standard deviations below the mean and are not currently measured. With the nearing of clinical trials for many rare epilepsy communities, we began to feel the urgency for outcome measures that would actually measure the smaller improvements our children make over time-the inchstones, not milestones.<\/p>\n\t<p>Le projet Inchstone est un groupe multidisciplinaire de consommateurs, de parties prenantes, de chercheurs et de cliniciens collaborant pour acc\u00e9l\u00e9rer le d\u00e9veloppement de mesures de r\u00e9sultats. Notre objectif est d\u2019avoir des mesures approuv\u00e9es par la FDA qui ont \u00e9t\u00e9 adapt\u00e9es pour fonctionner pour les DEE gravement touch\u00e9s d\u2019ici 5 ans.<\/p>\n\t<h2><strong>D\u00e9couvrez nos progr\u00e8s<\/strong><\/h2>\n<p>\u00c9coutez toutes les derni\u00e8res mises \u00e0 jour sur le projet Inchstone. Obtenez des d\u00e9tails sur tous les travaux en cours pour fournir des outils permettant de mesurer le changement dans les DEE.<\/p>\n<p>Explorez l\u2019impact de la recherche\u00a0: <a href=\"https:\/\/deepconnections.net\/fr\/inchstone-project\/inchstone-results\/\"><strong>R\u00e9sultats du projet Inchstone<\/strong><\/a><\/p>\n<p>Rencontrez l&#039;\u00e9quipe de direction : <a href=\"https:\/\/deepconnections.net\/fr\/inchstone-project\/inchstone-steering-committee\/\"><strong>Comit\u00e9 directeur d&#039;Inchstone<\/strong><\/a><\/p>\n<p>Chercheurs principaux d\u2019Inchstone\u00a0: <a href=\"https:\/\/deepconnections.net\/fr\/inchstone-project\/inchstone-researcher-bios\/\"><strong>Biographies des chercheurs d\u2019Inchstone<\/strong><\/a><\/p>\n<p>Inchstone provided feedback to the FDA on their drafts guidance &#8220;<em>Patient-Focused Drug Development: Selecting, Developing, or Modifying Fit-for-Purpose Clinical Outcome Assessments&#8221;. You can read our detailed feedback <strong><a href=\"https:\/\/www.regulations.gov\/comment\/FDA-2022-D-1385-0025\">ICI<\/a><\/strong>.<\/em><\/p>\n\t<meta itemprop=\"url\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Community-Update-February-2023.mp4\" \/><div style=\"width: 640px;\" class=\"wp-video\"><video class=\"wp-video-shortcode\" id=\"video-2827-2\" width=\"640\" height=\"360\" preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Community-Update-February-2023.mp4?_=2\" \/><a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Community-Update-February-2023.mp4\">https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/The-Inchstone-Project-Community-Update-February-2023.mp4<\/a><\/video><\/div>\n\t<h4><strong>Restez \u00e0 jour sur les derni\u00e8res recherches DEE. Inscrivez-vous maintenant pour obtenir des informations exclusives et des rapports d&#039;avancement.<\/strong><\/h4>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/fr\/contact\/\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\tS&#039;inscrire maintenant\n\t\t\t\t\t<\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/Inchstone-2023-Industry-Partners.png\" alt=\"_Inchstone 2023 Industry Partners\" itemprop=\"image\" height=\"1222\" width=\"2000\" title=\"_Partenaires industriels Inchstone 2023\" onerror=\"this.style.display='none'\"  \/>","protected":false},"excerpt":{"rendered":"<p>Precise Measurements for Those Severely Affected by Epilepsy Countless new targeted or gene-based therapies are nearing trials which could be jeopardized by the absence of tools to capture small but&hellip;<\/p>","protected":false},"author":4,"featured_media":3742,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-2827","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.2) - 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