{"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\/fa_ir\/inchstone-project\/","title":{"rendered":"\u067e\u0631\u0648\u0698\u0647 \u0627\u06cc\u0646\u0686\u0633\u062a\u0648\u0646"},"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\u0627\u0646\u062f\u0627\u0632\u0647 \u06af\u06cc\u0631\u06cc \u0647\u0627\u06cc \u062f\u0642\u06cc\u0642 \u0628\u0631\u0627\u06cc \u06a9\u0633\u0627\u0646\u06cc \u06a9\u0647 \u0628\u0647 \u0634\u062f\u062a \u062a\u062d\u062a \u062a\u0627\u062b\u06cc\u0631 \u0635\u0631\u0639 \u0647\u0633\u062a\u0646\u062f\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>\u067e\u0631\u0648\u0698\u0647 Inchstone \u06cc\u06a9 \u06af\u0631\u0648\u0647 \u0686\u0646\u062f \u0631\u0634\u062a\u0647 \u0627\u06cc \u0627\u0632 \u0645\u0635\u0631\u0641 \u06a9\u0646\u0646\u062f\u06af\u0627\u0646\u060c \u0633\u0647\u0627\u0645\u062f\u0627\u0631\u0627\u0646\u060c \u0645\u062d\u0642\u0642\u0627\u0646 \u0648 \u067e\u0632\u0634\u06a9\u0627\u0646 \u0627\u0633\u062a \u06a9\u0647 \u0628\u0631\u0627\u06cc \u062a\u0633\u0631\u06cc\u0639 \u062f\u0631 \u062a\u0648\u0633\u0639\u0647 \u0627\u0642\u062f\u0627\u0645\u0627\u062a \u0646\u062a\u06cc\u062c\u0647 \u0647\u0645\u06a9\u0627\u0631\u06cc \u0645\u06cc \u06a9\u0646\u0646\u062f. \u0647\u062f\u0641 \u0645\u0627 \u0627\u06cc\u0646 \u0627\u0633\u062a \u06a9\u0647 \u0627\u0642\u062f\u0627\u0645\u0627\u062a \u0645\u0648\u0631\u062f \u062a\u0627\u06cc\u06cc\u062f FDA \u0631\u0627 \u062f\u0627\u0634\u062a\u0647 \u0628\u0627\u0634\u06cc\u0645 \u06a9\u0647 \u0628\u0631\u0627\u06cc \u0622\u0646 \u062f\u0633\u062a\u0647 \u0627\u0632 DEE\u200c\u0647\u0627\u06cc\u06cc \u06a9\u0647 \u0628\u0647 \u0634\u062f\u062a \u062a\u062d\u062a \u062a\u0627\u062b\u06cc\u0631 \u0642\u0631\u0627\u0631 \u06af\u0631\u0641\u062a\u0647\u200c\u0627\u0646\u062f \u062f\u0631 \u0639\u0631\u0636 5 \u0633\u0627\u0644 \u06a9\u0627\u0631 \u06a9\u0646\u062f.<\/p>\n\t<h2><strong>\u067e\u06cc\u0634\u0631\u0641\u062a \u0645\u0627 \u0631\u0627 \u0628\u0631\u0631\u0633\u06cc \u06a9\u0646\u06cc\u062f<\/strong><\/h2>\n<p>\u0628\u0647 \u0622\u062e\u0631\u06cc\u0646 \u0628\u0647 \u0631\u0648\u0632 \u0631\u0633\u0627\u0646\u06cc \u0647\u0627\u06cc \u067e\u0631\u0648\u0698\u0647 Inchstone \u06af\u0648\u0634 \u062f\u0647\u06cc\u062f. \u062c\u0632\u0626\u06cc\u0627\u062a \u0645\u0631\u0628\u0648\u0637 \u0628\u0647 \u062a\u0645\u0627\u0645 \u06a9\u0627\u0631\u0647\u0627\u06cc\u06cc \u0631\u0627 \u06a9\u0647 \u0628\u0631\u0627\u06cc \u0627\u0631\u0627\u0626\u0647 \u0627\u0628\u0632\u0627\u0631\u0647\u0627\u06cc\u06cc \u0628\u0631\u0627\u06cc \u0627\u0646\u062f\u0627\u0632\u0647 \u06af\u06cc\u0631\u06cc \u062a\u063a\u06cc\u06cc\u0631\u0627\u062a \u062f\u0631 DEE \u0627\u0646\u062c\u0627\u0645 \u0645\u06cc \u0634\u0648\u062f\u060c \u062f\u0631\u06cc\u0627\u0641\u062a \u06a9\u0646\u06cc\u062f.<\/p>\n<p>\u0628\u0631\u0631\u0633\u06cc \u062a\u0623\u062b\u06cc\u0631 \u062a\u062d\u0642\u06cc\u0642: <a href=\"https:\/\/deepconnections.net\/fa_ir\/inchstone-project\/inchstone-results\/\"><strong>\u0646\u062a\u0627\u06cc\u062c \u067e\u0631\u0648\u0698\u0647 Inchstone<\/strong><\/a><\/p>\n<p>\u0628\u0627 \u062a\u06cc\u0645 \u0631\u0647\u0628\u0631\u06cc \u0622\u0634\u0646\u0627 \u0634\u0648\u06cc\u062f: <a href=\"https:\/\/deepconnections.net\/fa_ir\/inchstone-project\/inchstone-steering-committee\/\"><strong>\u06a9\u0645\u06cc\u062a\u0647 \u0631\u0627\u0647\u0628\u0631\u06cc \u0627\u06cc\u0646\u0686\u0633\u062a\u0648\u0646<\/strong><\/a><\/p>\n<p>\u0645\u062d\u0642\u0642\u06cc\u0646 \u0627\u0635\u0644\u06cc \u0627\u06cc\u0646\u0686\u0633\u062a\u0648\u0646: <a href=\"https:\/\/deepconnections.net\/fa_ir\/inchstone-project\/inchstone-researcher-bios\/\"><strong>\u0628\u06cc\u0648\u0633 \u0645\u062d\u0642\u0642 \u0627\u06cc\u0646\u0686\u0633\u062a\u0648\u0646<\/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\">\u0627\u06cc\u0646\u062c\u0627<\/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>\u062f\u0631 \u0645\u0648\u0631\u062f \u0622\u062e\u0631\u06cc\u0646 \u062a\u062d\u0642\u06cc\u0642\u0627\u062a DEE \u0628\u0647 \u0631\u0648\u0632 \u0628\u0627\u0634\u06cc\u062f. \u0628\u0631\u0627\u06cc \u0627\u0637\u0644\u0627\u0639\u0627\u062a \u0628\u06cc\u0646\u0634 \u0645\u0646\u062d\u0635\u0631 \u0628\u0647 \u0641\u0631\u062f \u0648 \u06af\u0632\u0627\u0631\u0634 \u0647\u0627\u06cc \u067e\u06cc\u0634\u0631\u0641\u062a\u060c \u0627\u06a9\u0646\u0648\u0646 \u062b\u0628\u062a \u0646\u0627\u0645 \u06a9\u0646\u06cc\u062f.<\/strong><\/h4>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/fa_ir\/contact\/\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\t\u062b\u0628\u062a \u0646\u0627\u0645 \u06a9\u0646\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=\"_\u0627\u06cc\u0646\u0686\u0633\u062a\u0648\u0646 2023 \u0634\u0631\u06a9\u0627\u06cc \u0635\u0646\u0639\u062a\" 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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