{"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\/kir\/inchstone-project\/","title":{"rendered":"Inchstone \u0434\u043e\u043b\u0431\u043e\u043e\u0440\u0443"},"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\t\u042d\u043f\u0438\u043b\u0435\u043f\u0441\u0438\u044f\u0434\u0430\u043d \u043a\u0430\u0442\u0443\u0443 \u0436\u0430\u0431\u044b\u0440\u043a\u0430\u0433\u0430\u043d\u0434\u0430\u0440 \u04af\u0447\u04af\u043d \u0442\u0430\u043a \u04e9\u043b\u0447\u04e9\u04e9\u043b\u04e9\u0440\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>Inchstone \u0434\u043e\u043b\u0431\u043e\u043e\u0440\u0443 - \u0431\u0443\u043b \u043a\u0435\u0440\u0435\u043a\u0442\u04e9\u04e9\u0447\u04af\u043b\u04e9\u0440\u0434\u04af\u043d, \u043a\u044b\u0437\u044b\u043a\u0434\u0430\u0440 \u0442\u0430\u0440\u0430\u043f\u0442\u0430\u0440\u0434\u044b\u043d, \u0438\u0437\u0438\u043b\u0434\u04e9\u04e9\u0447\u04af\u043b\u04e9\u0440\u0434\u04af\u043d \u0436\u0430\u043d\u0430 \u043a\u043b\u0438\u043d\u0438\u043a\u0442\u0435\u0440\u0434\u0438\u043d \u043d\u0430\u0442\u044b\u0439\u0436\u0430\u043b\u0430\u0440\u044b\u043d \u0438\u0448\u0442\u0435\u043f \u0447\u044b\u0433\u0443\u0443\u043d\u0443 \u0442\u0435\u0437\u0434\u0435\u0442\u04af\u04af \u04af\u0447\u04af\u043d \u043a\u044b\u0437\u043c\u0430\u0442\u0442\u0430\u0448\u043a\u0430\u043d \u043c\u0443\u043b\u044c\u0442\u0438\u0434\u0438\u0441\u0446\u0438\u043f\u043b\u0438\u043d\u0430\u0440\u0434\u044b\u043a \u0442\u043e\u043f. \u0411\u0438\u0437\u0434\u0438\u043d \u043c\u0430\u043a\u0441\u0430\u0442 5 \u0436\u044b\u043b\u0434\u044b\u043d \u0438\u0447\u0438\u043d\u0434\u0435 \u043a\u0430\u0442\u0443\u0443 \u0442\u0430\u0430\u0441\u0438\u0440 \u044d\u0442\u043a\u0435\u043d DEE \u04af\u0447\u04af\u043d \u0438\u0448\u0442\u04e9\u04e9\u0433\u04e9 \u044b\u043b\u0430\u0439\u044b\u043a\u0442\u0430\u0448\u0442\u044b\u0440\u044b\u043b\u0433\u0430\u043d FDA \u0442\u0430\u0440\u0430\u0431\u044b\u043d\u0430\u043d \u0431\u0435\u043a\u0438\u0442\u0438\u043b\u0433\u0435\u043d \u0447\u0430\u0440\u0430\u043b\u0430\u0440\u0433\u0430 \u044d\u044d \u0431\u043e\u043b\u0443\u0443.<\/p>\n\t<h2><strong>\u0411\u0438\u0437\u0434\u0438\u043d \u043f\u0440\u043e\u0433\u0440\u0435\u0441\u0441\u0442\u0438 \u0442\u0435\u043a\u0448\u0435\u0440\u0438\u04a3\u0438\u0437<\/strong><\/h2>\n<p>Inchstone \u0434\u043e\u043b\u0431\u043e\u043e\u0440\u0443 \u0431\u043e\u044e\u043d\u0447\u0430 \u0430\u043a\u044b\u0440\u043a\u044b \u0436\u0430\u04a3\u044b\u043b\u044b\u043a\u0442\u0430\u0440\u0434\u044b \u0443\u0433\u0443\u04a3\u0443\u0437. DEE\u0434\u0435\u0433\u0438 \u04e9\u0437\u0433\u04e9\u0440\u04af\u04af\u043b\u04e9\u0440\u0434\u04af \u04e9\u043b\u0447\u04e9\u04e9 \u04af\u0447\u04af\u043d \u043a\u0443\u0440\u0430\u043b\u0434\u0430\u0440 \u043c\u0435\u043d\u0435\u043d \u043a\u0430\u043c\u0441\u044b\u0437 \u043a\u044b\u043b\u0443\u0443 \u0431\u043e\u044e\u043d\u0447\u0430 \u0430\u0442\u043a\u0430\u0440\u044b\u043b\u044b\u043f \u0436\u0430\u0442\u043a\u0430\u043d \u0431\u0430\u0440\u0434\u044b\u043a \u0438\u0448\u0442\u0435\u0440 \u0431\u043e\u044e\u043d\u0447\u0430 \u0447\u043e\u043e-\u0436\u0430\u0439\u044b\u043d \u0430\u043b\u044b\u04a3\u044b\u0437.<\/p>\n<p>\u0418\u0437\u0438\u043b\u0434\u04e9\u04e9\u043d\u04af\u043d \u0442\u0430\u0430\u0441\u0438\u0440\u0438\u043d \u0438\u0437\u0438\u043b\u0434\u04e9\u04e9: <a href=\"https:\/\/deepconnections.net\/kir\/inchstone-project\/inchstone-results\/\"><strong>Inchstone \u0414\u043e\u043b\u0431\u043e\u043e\u0440\u0443\u043d\u0443\u043d \u043d\u0430\u0442\u044b\u0439\u0436\u0430\u043b\u0430\u0440\u044b<\/strong><\/a><\/p>\n<p>\u041b\u0438\u0434\u0435\u0440\u043b\u0438\u043a \u043a\u043e\u043c\u0430\u043d\u0434\u0430 \u043c\u0435\u043d\u0435\u043d \u0442\u0430\u0430\u043d\u044b\u0448\u044b\u04a3\u044b\u0437: <a href=\"https:\/\/deepconnections.net\/kir\/inchstone-project\/inchstone-steering-committee\/\"><strong>Inchstone \u0411\u0430\u0448\u043a\u0430\u0440\u0443\u0443 \u043a\u043e\u043c\u0438\u0442\u0435\u0442\u0438<\/strong><\/a><\/p>\n<p>Inchstone \u0431\u0430\u0448\u043a\u044b \u0442\u0435\u0440\u0433\u04e9\u04e9\u0447\u04af\u043b\u04e9\u0440\u04af: <a href=\"https:\/\/deepconnections.net\/kir\/inchstone-project\/inchstone-researcher-bios\/\"><strong>Inchstone Researcher Bios<\/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\">\u0416\u0415\u0420\u0414\u0415<\/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>DEE \u0438\u0437\u0438\u043b\u0434\u04e9\u04e9\u043b\u04e9\u0440\u04af\u043d\u0434\u04e9\u0433\u04af \u0430\u043a\u044b\u0440\u043a\u044b \u0436\u0430\u04a3\u044b\u043b\u044b\u043a\u0442\u0430\u0440\u0434\u0430\u043d \u043a\u0430\u0431\u0430\u0440\u0434\u0430\u0440 \u0431\u043e\u043b\u0443\u04a3\u0443\u0437. \u042d\u043a\u0441\u043a\u043b\u044e\u0437\u0438\u0432\u0434\u04af\u04af \u0442\u04af\u0448\u04af\u043d\u04af\u043a\u0442\u04e9\u0440 \u0436\u0430\u043d\u0430 \u043f\u0440\u043e\u0433\u0440\u0435\u0441\u0441 \u0431\u043e\u044e\u043d\u0447\u0430 \u043e\u0442\u0447\u0435\u0442\u0442\u043e\u0440 \u04af\u0447\u04af\u043d \u0430\u0437\u044b\u0440 \u043a\u0430\u0442\u0442\u0430\u043b\u044b\u04a3\u044b\u0437.<\/strong><\/h4>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/kir\/contact\/\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\t\u0410\u0437\u044b\u0440 \u043a\u0430\u0442\u0442\u0430\u043b\u0433\u044b\u043b\u0430\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=\"_Inchstone 2023 Industry Partners\" 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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