{"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\/is_is\/inchstone-project\/","title":{"rendered":"Inchstone verkefni\u00f0"},"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\tN\u00e1kv\u00e6mar m\u00e6lingar fyrir \u00fe\u00e1 sem ver\u00f0a fyrir alvarlegum \u00e1hrifum af flogaveiki\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>The Inchstone Project er \u00feverfaglegur h\u00f3pur neytenda, hagsmunaa\u00f0ila, v\u00edsindamanna og l\u00e6kna sem vinna saman a\u00f0 \u00fev\u00ed a\u00f0 fl\u00fdta fyrir \u00fer\u00f3un ni\u00f0urst\u00f6\u00f0um\u00e6linga. Markmi\u00f0 okkar er a\u00f0 hafa FDA sam\u00feykktar r\u00e1\u00f0stafanir sem hafa veri\u00f0 a\u00f0laga\u00f0ar til a\u00f0 virka fyrir \u00fe\u00e1 sem hafa alvarlega \u00e1hrif \u00e1 DEE innan 5 \u00e1ra.<\/p>\n\t<h2><strong>Sko\u00f0a\u00f0u framfarir okkar<\/strong><\/h2>\n<p>Hlusta\u00f0u \u00e1 allar n\u00fdjustu uppf\u00e6rslurnar \u00e1 Inchstone Project. F\u00e1\u00f0u uppl\u00fdsingar um alla vinnu sem er unnin til a\u00f0 \u00fatvega verkf\u00e6ri til a\u00f0 m\u00e6la breytingar \u00e1 DEEs.<\/p>\n<p>Kanna\u00f0u \u00e1hrif ranns\u00f3kna: <a href=\"https:\/\/deepconnections.net\/is_is\/inchstone-project\/inchstone-results\/\"><strong>Ni\u00f0urst\u00f6\u00f0ur Inchstone verkefnisins<\/strong><\/a><\/p>\n<p>Hittu lei\u00f0togah\u00f3pinn: <a href=\"https:\/\/deepconnections.net\/is_is\/inchstone-project\/inchstone-steering-committee\/\"><strong>Inchstone st\u00fdrih\u00f3pur<\/strong><\/a><\/p>\n<p>A\u00f0alrannsakendur Inchstone: <a href=\"https:\/\/deepconnections.net\/is_is\/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\">H\u00c9R<\/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>Vertu uppf\u00e6r\u00f0ur um \u00fea\u00f0 n\u00fdjasta \u00ed DEE ranns\u00f3knum. Skr\u00e1\u00f0u \u00feig n\u00fana fyrir einkar\u00e9tt inns\u00fdn og framvindusk\u00fdrslur.<\/strong><\/h4>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/is_is\/contact\/\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\tSkr\u00e1\u00f0u \u00feig n\u00fana\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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