{"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\/ckb\/inchstone-project\/","title":{"rendered":"Projeya 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\tP\u00eevandin\u00ean Bir\u00eak\u00fbp\u00eak Ji bo Kes\u00ean Bi Zehmet\u00ee Bi Epilepsiy\u00ea Bi bandor dibin\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>Projeya Inchstone komek pirziman\u00ee ya xer\u00eedar, be\u015fdar, l\u00eakol\u00eener \u00fb bij\u00eejkan e ku ji bo bilezkirina p\u00ea\u015fkeftina tedb\u00eer\u00ean encam\u00ea hevkariy\u00ea dikin. Armanca me ew e ku FDA tedb\u00eer\u00ean pejirand\u00ee y\u00ean ku hatine adaptekirin ji bo wan DEE-y\u00ean ku bi giran\u00ee bandor b\u00fbne di nav 5 salan de bixebitin.<\/p>\n\t<h2><strong>P\u00ea\u015fkeftina Me Binih\u00earin<\/strong><\/h2>\n<p>Li hem\u00ee n\u00fbvekirin\u00ean her\u00ee daw\u00ee y\u00ean li ser Projeya Inchstone guhdar\u00ee bikin. Li ser hem\u00ee xebata ku t\u00eane kirin ji bo peydakirina am\u00fbr\u00ean ji bo p\u00eevandina guhartina di DEE-yan de h\u00fbrgul\u00ee bist\u00eenin.<\/p>\n<p>Bandora L\u00eakol\u00een\u00ea Bigerin: <a href=\"https:\/\/deepconnections.net\/ckb\/inchstone-project\/inchstone-results\/\"><strong>Encam\u00ean Projeya Inchstone<\/strong><\/a><\/p>\n<p>Bi T\u00eema R\u00eabertiy\u00ea re hevd\u00eetin bikin: <a href=\"https:\/\/deepconnections.net\/ckb\/inchstone-project\/inchstone-steering-committee\/\"><strong>Kom\u00eeteya R\u00eavebir a Inchstone<\/strong><\/a><\/p>\n<p>L\u00eakol\u00eener\u00ean sereke y\u00ean Inchstone: <a href=\"https:\/\/deepconnections.net\/ckb\/inchstone-project\/inchstone-researcher-bios\/\"><strong>Inchstone L\u00eakol\u00eener 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\">VIR<\/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>Di l\u00eakol\u00eena DEE de li ser n\u00fbtir\u00een n\u00fbve bim\u00eenin. Naha ji bo t\u00eagihi\u015ftin\u00ean taybet\u00ee \u00fb rapor\u00ean p\u00ea\u015fkeftin\u00ea qeyd bikin.<\/strong><\/h4>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/ckb\/contact\/\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\tSign Up Now\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 Hevkar\u00ean P\u00ee\u015fesaziy\u00ea\" 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 v28.3) - 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