{"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\/cs_cz\/inchstone-project\/","title":{"rendered":"Projekt 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\u0159esn\u00e1 m\u011b\u0159en\u00ed pro osoby t\u011b\u017ece posti\u017een\u00e9 epilepsi\u00ed\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>Projekt Inchstone je multidisciplin\u00e1rn\u00ed skupina spot\u0159ebitel\u016f, z\u00fa\u010dastn\u011bn\u00fdch stran, v\u00fdzkumn\u00fdch pracovn\u00edk\u016f a l\u00e9ka\u0159\u016f spolupracuj\u00edc\u00edch na urychlen\u00ed v\u00fdvoje v\u00fdsledk\u016f m\u011b\u0159en\u00ed. Na\u0161\u00edm c\u00edlem je m\u00edt do 5 let schv\u00e1len\u00e1 opat\u0159en\u00ed FDA, kter\u00e1 budou uzp\u016fsobena tak, aby fungovala pro ty v\u00e1\u017en\u011b posti\u017een\u00e9 DEE.<\/p>\n\t<h2><strong>Pod\u00edvejte se na n\u00e1\u0161 pokrok<\/strong><\/h2>\n<p>Poslouchejte v\u0161echny nejnov\u011bj\u0161\u00ed aktualizace projektu Inchstone. Z\u00edskejte podrobnosti o ve\u0161ker\u00e9 pr\u00e1ci, kter\u00e1 se prov\u00e1d\u00ed za \u00fa\u010delem poskytnut\u00ed n\u00e1stroj\u016f pro m\u011b\u0159en\u00ed zm\u011bn v DEE.<\/p>\n<p>Prozkoumat dopad v\u00fdzkumu: <a href=\"https:\/\/deepconnections.net\/cs_cz\/inchstone-project\/inchstone-results\/\"><strong>V\u00fdsledky projektu Inchstone<\/strong><\/a><\/p>\n<p>Seznamte se s vedouc\u00edm t\u00fdmem: <a href=\"https:\/\/deepconnections.net\/cs_cz\/inchstone-project\/inchstone-steering-committee\/\"><strong>\u0158\u00edd\u00edc\u00ed v\u00fdbor Inchstone<\/strong><\/a><\/p>\n<p>Hlavn\u00ed vy\u0161et\u0159ovatel\u00e9 Inchstone: <a href=\"https:\/\/deepconnections.net\/cs_cz\/inchstone-project\/inchstone-researcher-bios\/\"><strong>Bios v\u00fdzkumn\u00edka Inchstone<\/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\">TADY<\/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>Z\u016fsta\u0148te informov\u00e1ni o nejnov\u011bj\u0161\u00edch v\u00fdzkumech DEE. Zaregistrujte se nyn\u00ed a z\u00edskejte exkluzivn\u00ed statistiky a zpr\u00e1vy o pokroku.<\/strong><\/h4>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/cs_cz\/contact\/\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\tZaregistrujte se\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 pr\u016fmyslov\u00ed partne\u0159i\" 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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