{"id":4850,"date":"2022-12-10T19:07:39","date_gmt":"2022-12-11T03:07:39","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=4850"},"modified":"2024-10-03T12:52:56","modified_gmt":"2024-10-03T19:52:56","slug":"inchstone-results","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/fa_ir\/inchstone-project\/inchstone-results\/","title":{"rendered":"\u0646\u062a\u0627\u06cc\u062c \u067e\u0631\u0648\u0698\u0647 Inchstone"},"content":{"rendered":"<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/12\/Inchstone-Horiz-FullColor-1024x209.jpg\" alt=\"The Inchstone Project\" itemprop=\"image\" height=\"209\" width=\"1024\" title=\"Inchstone-Horiz-FullColor\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/plugins\/bb-plugin\/img\/pixel.png\" alt=\"\" itemprop=\"image\" onerror=\"this.style.display='none'\"  \/>\n<h1>\n\t\tInchstone Results To Date\n\t<\/h1>\n<h2>\n\t\tNew publication: exploring novel cognition measures in scn2a-Related disorders\n\t<\/h2>\n\t<p>We are excited to share a recent publication led by one of our Principal Investigators, Dr. Natasha Ludwig&#8217;s, <em><a href=\"https:\/\/authors.elsevier.com\/c\/1joTk5Qt1H3mtf\">Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder<\/a>.<\/em> This publication explores innovative methods for assessing cognition in individuals with SCN2A-related disorders. Highlighting the limitations of traditional assessments for the DEE population and promising alternative tools for capturing cognition in individuals with severe to profound functional impairments. These findings will help our team develop tools to more appropriately measure this population,\u00a0pave the way for improved clinical care and readiness for future clinical trials.<\/p>\n\t\t\t\t<a href=\"https:\/\/authors.elsevier.com\/c\/1joTk5Qt1H3mtf\" target=\"_self\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/10\/Screenshot-2024-10-03-at-3.40.55\u202fPM-1024x897.png\" alt=\"Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder\" itemprop=\"image\" height=\"897\" width=\"1024\" title=\"Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n<h2>\n\t\tRare Disease Group Infographics From DEE Parents Speak Survey\n\t<\/h2>\n\t<p>The infographics below contain an overview summary of disease-specific groups within the DEE Parents Speak survey, as well as a survey-wide summary. Each of these groups had more than 15 families participate. To view the full infographic, click on an image and it will open in a new tab.<\/p>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/Entire-Sample-Dashboard_final3.png\" target=\"_blank\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/plugins\/bb-plugin\/img\/pixel.png\" alt=\"\" itemprop=\"image\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/Entire-Sample-Dashboard_final3-1.png\" target=\"_self\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/Entire-Sample-Dashboard_final.jpg\" alt=\"All DEEs Infographic\" itemprop=\"image\" height=\"396\" width=\"396\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/Entire-Sample-Dashboard_final.jpg 396w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/Entire-Sample-Dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/Entire-Sample-Dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/Entire-Sample-Dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 396px) 100vw, 396px\" title=\"All DEEs Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL1-Dashboard_final.png\" target=\"_blank\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL1-Dashboard_final.jpg\" alt=\"ASXL1 Infographic\" itemprop=\"image\" height=\"397\" width=\"397\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL1-Dashboard_final.jpg 397w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL1-Dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL1-Dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL1-Dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 397px) 100vw, 397px\" title=\"ASXL1 Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL3-Dashboard_final.png\" target=\"_blank\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL3-Dashboard_final.jpg\" alt=\"ASXL3 Infographic\" itemprop=\"image\" height=\"400\" width=\"400\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL3-Dashboard_final.jpg 400w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL3-Dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL3-Dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/ASXL3-Dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 400px) 100vw, 400px\" title=\"ASXL3 Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/FOXG1-dashboard_final.png\" target=\"_blank\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/FOXG1-dashboard_final.jpg\" alt=\"FOXG1 Infographic\" itemprop=\"image\" height=\"398\" width=\"398\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/FOXG1-dashboard_final.jpg 398w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/FOXG1-dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/FOXG1-dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/FOXG1-dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 398px) 100vw, 398px\" title=\"FOXG1 Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/LGS-Dashboard_final.png\" target=\"_blank\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/LGS-Dashboard_final.jpg\" alt=\"LGS Infographic\" itemprop=\"image\" height=\"400\" width=\"400\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/LGS-Dashboard_final.jpg 400w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/LGS-Dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/LGS-Dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/LGS-Dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 400px) 100vw, 400px\" title=\"LGS Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN2A-Dashboard_final1.png\" target=\"_self\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN2A-Dashboard_final.jpg\" alt=\"SCN2A Infographic\" itemprop=\"image\" height=\"395\" width=\"395\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN2A-Dashboard_final.jpg 395w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN2A-Dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN2A-Dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN2A-Dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 395px) 100vw, 395px\" title=\"SCN2A Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN8A-Dashboard_final5.png\" target=\"_blank\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN8A-Dashboard_final.jpg\" alt=\"SCN8A Infographic\" itemprop=\"image\" height=\"395\" width=\"395\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN8A-Dashboard_final.jpg 395w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN8A-Dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN8A-Dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SCN8A-Dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 395px) 100vw, 395px\" title=\"SCN8A Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SHANK3-Dashboard_final.png\" target=\"_blank\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SHANK3-Dashboard_final.jpg\" alt=\"SHANK3 Infographic\" itemprop=\"image\" height=\"395\" width=\"395\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SHANK3-Dashboard_final.jpg 395w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SHANK3-Dashboard_final-300x300.jpg 300w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SHANK3-Dashboard_final-150x150.jpg 150w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/08\/SHANK3-Dashboard_final-12x12.jpg 12w\" sizes=\"(max-width: 395px) 100vw, 395px\" title=\"SHANK3 Infographic\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/a>\n<h2>\n\t\t\u0646\u062a\u0627\u06cc\u062c \u0627\u0648\u0644\u06cc\u0647 \u0627\u0632 \u0646\u0638\u0631\u0633\u0646\u062c\u06cc \u067e\u06cc\u0634\u06af\u0627\u0645\u0627\u0646\u0647 DEE Parents Speak \u0628\u0647 \u0627\u0634\u062a\u0631\u0627\u06a9 \u06af\u0630\u0627\u0634\u062a\u0647 \u0634\u062f\u0647 \u0628\u0627 \u0627\u0646\u062c\u0645\u0646\n\t<\/h2>\n\t<p>\u062f\u0631 \u0627\u06cc\u0646 \u0628\u0647\u200c\u0631\u0648\u0632\u0631\u0633\u0627\u0646\u06cc \u0627\u0646\u062c\u0645\u0646\u060c \u062a\u06cc\u0645 \u062a\u062d\u0642\u06cc\u0642\u0627\u062a\u06cc \u067e\u0631\u0648\u0698\u0647 Inchstone \u067e\u06cc\u0634\u0631\u0641\u062a \u062a\u0644\u0627\u0634\u200c\u0647\u0627\u06cc \u0645\u0627 \u0628\u0631\u0627\u06cc \u0627\u06cc\u062c\u0627\u062f \u0637\u06cc\u0641 \u0648\u0633\u06cc\u0639\u06cc \u0627\u0632 \u0627\u0628\u0632\u0627\u0631\u0647\u0627\u06cc \u0627\u0631\u0632\u06cc\u0627\u0628\u06cc \u0631\u0627 \u0628\u0647 \u0627\u0634\u062a\u0631\u0627\u06a9 \u0645\u06cc\u200c\u06af\u0630\u0627\u0631\u062f \u06a9\u0647 \u0645\u06cc\u200c\u062a\u0648\u0627\u0646\u062f \u067e\u06cc\u0634\u0631\u0641\u062a \u0631\u0627 \u062f\u0631 \u0627\u0641\u0631\u0627\u062f\u06cc \u06a9\u0647 \u0639\u0645\u06cc\u0642\u200c\u062a\u0631 \u062a\u062d\u062a \u062a\u0623\u062b\u06cc\u0631 \u0627\u062e\u062a\u0644\u0627\u0644\u0627\u062a \u0647\u0633\u062a\u0646\u062f \u0648 \u0628\u0647 \u0637\u0648\u0631 \u0645\u062f\u0627\u0648\u0645 \u0627\u0646\u062f\u0627\u0632\u0647\u200c\u06af\u06cc\u0631\u06cc \u0646\u0634\u062f\u0647 \u0628\u0627\u0642\u06cc \u0645\u06cc\u200c\u0645\u0627\u0646\u0646\u062f\u060c \u0628\u0647\u200c\u0637\u0648\u0631 \u062f\u0642\u06cc\u0642 \u0627\u0646\u062f\u0627\u0632\u0647\u200c\u06af\u06cc\u0631\u06cc \u06a9\u0646\u062f. \u0628\u0647 \u0637\u0648\u0631 \u062e\u0627\u0635\u060c \u0627\u06cc\u0646 \u062a\u06cc\u0645 \u0628\u0647\u200c\u0631\u0648\u0632\u0631\u0633\u0627\u0646\u06cc \u062f\u0627\u062f\u0647\u200c\u0647\u0627\u06cc \u062c\u0645\u0639\u200c\u0622\u0648\u0631\u06cc\u200c\u0634\u062f\u0647 \u0627\u0632 \u0637\u0631\u06cc\u0642 \u0646\u0638\u0631\u0633\u0646\u062c\u06cc \u0627\u062e\u06cc\u0631 DEE Parents Speak \u0631\u0627 \u0627\u0632 \u0646\u0632\u062f\u06cc\u06a9 \u0628\u0647 270 \u062e\u0627\u0646\u0648\u0627\u062f\u0647 \u062f\u0631 \u0645\u0648\u0631\u062f \u0627\u06cc\u0646\u06a9\u0647 \u0641\u0631\u0632\u0646\u062f\u0627\u0646\u0634\u0627\u0646 \u0686\u0647 \u06a9\u0627\u0631\u06cc \u0645\u06cc\u200c\u062a\u0648\u0627\u0646\u0646\u062f \u0627\u0646\u062c\u0627\u0645 \u062f\u0647\u0646\u062f\u060c \u0627\u0648\u0644\u0648\u06cc\u062a\u200c\u0647\u0627\u06cc \u0622\u0646\u0647\u0627 \u0686\u06cc\u0633\u062a \u0648 \u0646\u062a\u0627\u06cc\u062c\u06cc \u062f\u0631 \u0645\u0648\u0631\u062f \u0627\u06cc\u0646\u06a9\u0647 \u0627\u0628\u0632\u0627\u0631\u0647\u0627\u06cc\u06cc \u06a9\u0647 \u0627\u0633\u062a\u0641\u0627\u062f\u0647 \u0645\u06cc\u200c\u06a9\u0646\u06cc\u0645 \u062a\u0627 \u0686\u0647 \u062d\u062f \u062a\u0648\u0627\u0646\u0627\u06cc\u06cc\u200c\u0647\u0627\u06cc \u0622\u0646\u200c\u0647\u0627 \u0631\u0627 \u0628\u0647 \u062e\u0648\u0628\u06cc \u0646\u0634\u0627\u0646 \u0645\u06cc\u200c\u062f\u0647\u0646\u062f \u0627\u0631\u0627\u0626\u0647 \u0645\u06cc\u200c\u06a9\u0646\u062f. \u062a\u062d\u062a \u062a\u0627\u062b\u06cc\u0631 DEE \u0647\u0627<\/p>\n\t<iframe title=\"\u0628\u0647 \u0631\u0648\u0632 \u0631\u0633\u0627\u0646\u06cc \u0627\u0646\u062c\u0645\u0646 \u067e\u0631\u0648\u0698\u0647 Inchstone \u0628\u0647\u0627\u0631 2024\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/fDKICU1rhyQ?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Inchstone-Community-Update-Slides_3-25-2024.pdf\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\t\u0627\u0633\u0644\u0627\u06cc\u062f\u0647\u0627 \u0631\u0627 \u0627\u0632 \u0628\u0647\u200c\u0631\u0648\u0632\u0631\u0633\u0627\u0646\u06cc \u0627\u0646\u062c\u0645\u0646 \u0645\u0634\u0627\u0647\u062f\u0647 \u06a9\u0646\u06cc\u062f\n\t\t\t\t\t<\/a>\n<h2>\n\t\t\u0627\u0631\u0627\u0626\u0647 \u062f\u0631 \u0627\u0646\u062c\u0645\u0646 \u0628\u06cc\u0646 \u0627\u0644\u0645\u0644\u0644\u06cc \u0639\u0635\u0628 \u0631\u0648\u0627\u0646\u0634\u0646\u0627\u0633\u06cc 2024\n\t<\/h2>\n\t<p>Two Inchstone posters were orally presented at the International Neuropsychological Society (INS) meeting as part of an Early Life Epilepsy poster symposium of the Epilepsy SIG &#8211; one by Dr. Mary Wojnaroski (right) and another by Dr. Natasha Ludwig (left).<\/p>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Ludwig-INS-Responsivity.png\" alt=\"Ludwig INS - Responsivity\" itemprop=\"image\" height=\"778\" width=\"1040\" title=\"Ludwig INS - \u067e\u0627\u0633\u062e\u06af\u0648\u06cc\u06cc\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Woknaroski-INS-DP4-.png\" alt=\"Woknaroski INS - DP4\" itemprop=\"image\" height=\"798\" width=\"1064\" title=\"Woknaroski INS - DP4\" onerror=\"this.style.display='none'\"  \/>\n<h2>\n\t\t\u062f\u0648 \u0627\u0646\u062a\u0634\u0627\u0631\u0627\u062a \u0633\u0645\u06cc\u0646\u0627\u0644\n\t<\/h2>\n\t<p>Two groundbreaking publications were released in late 2023 and early 2024 &#8211; each contributing to a shift in the conversations about why we must and how we can measure those profoundly impacted by DEEs and other severe disorders. A paper of the FDA Patient Focused Drug Development process and how it should consider the DEEs by Dr. Anne Berg is on the left. Another on the use of meaningful change to measure progress in the DEEs by Dr. Jenny Downs is on the right.<\/p>\n\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Berg_FDA-PFDD.pdf\" target=\"_blank\" rel=\"noopener\" itemprop=\"url\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-26-at-11.08.46-PM.png\" alt=\"Screen Shot 2024-03-26 at 11.08.46 PM\" itemprop=\"image\" height=\"538\" width=\"804\" title=\"\u0627\u0633\u06a9\u0631\u06cc\u0646 \u0634\u0627\u062a 26\/03\/2024 \u062f\u0631 \u0633\u0627\u0639\u062a 11.08.46 \u0628\u0639\u062f \u0627\u0632 \u0638\u0647\u0631\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Downs_What-Does-Better-Look-Like.pdf\" target=\"_blank\" rel=\"noopener\" itemprop=\"url\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-26-at-11.15.32-PM.png\" alt=\"Screen Shot 2024-03-26 at 11.15.32 PM\" itemprop=\"image\" height=\"1250\" width=\"1876\" title=\"\u0627\u0633\u06a9\u0631\u06cc\u0646 \u0634\u0627\u062a 26\/03\/2024 \u062f\u0631 \u0633\u0627\u0639\u062a 11.15.32 \u0628\u0639\u062f \u0627\u0632 \u0638\u0647\u0631\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n<h2>\n\t\tPoster presented at American Epilepsy Society Meeting &#8211; 2023\n\t<\/h2>\n\t<p>\u062a\u06cc\u0645 \u062a\u062d\u0642\u06cc\u0642\u0627\u062a\u06cc \u067e\u0631\u0648\u0698\u0647 Inshtone \u0628\u0631\u062e\u06cc \u0627\u0632 \u0646\u062a\u0627\u06cc\u062c \u0627\u0648\u0644\u06cc\u0647 \u0646\u0638\u0631\u0633\u0646\u062c\u06cc DEE Parents Speak \u0631\u0627 \u0627\u0632 \u0645\u0631\u0627\u0642\u0628\u06cc\u0646 \u062f\u0631 \u0633\u0631\u0627\u0633\u0631 \u062c\u0627\u0645\u0639\u0647 DEE \u0627\u0631\u0627\u0626\u0647 \u06a9\u0631\u062f \u06a9\u0647 \u0627\u0648\u0644\u0648\u06cc\u062a\u200c\u0647\u0627\u06cc \u0622\u0646\u0647\u0627 \u0628\u0631\u0627\u06cc \u0641\u0631\u0632\u0646\u062f\u0627\u0646\u0634\u0627\u0646 \u0686\u06cc\u0633\u062a\u060c \u0686\u0647 \u062a\u0648\u0627\u0646\u0627\u06cc\u06cc\u200c\u0647\u0627\u06cc\u06cc \u062f\u0627\u0631\u0646\u062f \u0648 \u0637\u06cc\u0641 \u0648\u0633\u06cc\u0639\u06cc \u0627\u0632 \u0627\u0628\u0632\u0627\u0631\u0647\u0627\u06cc \u0627\u0631\u0632\u06cc\u0627\u0628\u06cc \u0628\u0627\u0644\u06cc\u0646\u06cc \u0631\u0627 \u062f\u0631 \u0628\u06cc\u0634 \u0627\u0632 20 \u0627\u062e\u062a\u0644\u0627\u0644 \u0622\u0632\u0645\u0627\u06cc\u0634 \u06a9\u0631\u062f\u0646\u062f.<\/p>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/IMG_5389-1024x768.jpg\" alt=\"IMG_5389\" itemprop=\"image\" height=\"768\" width=\"1024\" title=\"IMG_5389\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Inchstone-Poster-AES-2023-print.pdf\" target=\"_blank\" rel=\"noopener\" itemprop=\"url\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Inchstone-AES-2023-poster.png\" alt=\"Inchstone AES 2023 poster\" itemprop=\"image\" height=\"872\" width=\"1576\" title=\"\u067e\u0648\u0633\u062a\u0631 Inchstone AES 2023\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/plugins\/bb-plugin\/img\/pixel.png\" alt=\"\" itemprop=\"image\" onerror=\"this.style.display='none'\"  \/>\n<h2>\n\t\tHosted Symposium at Gatlinburg 2023 &#8211; &#8220;Capturing Inchstones: Novel Approaches to Measurement for Severely Affected Children With SCN2A-Associated Developmental and Epileptic Encephalopathy&#8221;\n\t<\/h2>\n\t<p>\u0627\u06cc\u0646 \u0633\u0645\u067e\u0648\u0632\u06cc\u0648\u0645 \u0646\u062a\u0627\u06cc\u062c \u062d\u0627\u0635\u0644 \u0627\u0632 \u0645\u0637\u0627\u0644\u0639\u0647 \u0622\u0632\u0645\u0627\u06cc\u0634\u06cc \u0645\u0627 \u0631\u0627 \u06a9\u0647 \u0628\u0627 \u0628\u0646\u06cc\u0627\u062f FamilieSCN2A \u0627\u0646\u062c\u0627\u0645 \u0634\u062f \u0628\u0647 \u0627\u0634\u062a\u0631\u0627\u06a9 \u06af\u0630\u0627\u0634\u062a. <i>\u067e\u0631\u0648\u0698\u0647 \u0627\u06cc\u0646\u0686\u0633\u062a\u0648\u0646 <\/i>\u0648 \u0645\u0637\u0627\u0644\u0639\u0647 \u0622\u0645\u0627\u062f\u06af\u06cc \u06a9\u0627\u0631\u0622\u0632\u0645\u0627\u06cc\u06cc \u0628\u0627\u0644\u06cc\u0646\u06cc SCN2A \u0646\u0642\u0634 \u0645\u0647\u0645\u06cc \u062f\u0631 \u0637\u0631\u0627\u062d\u06cc\u060c \u0627\u062c\u0631\u0627 \u0648 \u062d\u0645\u0627\u06cc\u062a \u0627\u0632 \u062a\u062d\u0642\u06cc\u0642\u0627\u062a \u0645\u0634\u0627\u0631\u06a9\u062a\u06cc\u060c \u0628\u06cc\u0646 \u0631\u0634\u062a\u0647 \u0627\u06cc \u0648 \u0686\u0646\u062f \u0645\u0631\u06a9\u0632\u06cc \u0627\u0631\u0627\u0626\u0647 \u0634\u062f\u0647 \u062f\u0631 \u0627\u06cc\u0646 \u0633\u0645\u067e\u0648\u0632\u06cc\u0648\u0645 \u0627\u06cc\u0641\u0627 \u06a9\u0631\u062f. \u0644\u06cc \u0634\u0648\u0633\u062a \u0645\u0627\u06cc\u0631\u0632 \u0648 \u06af\u0627\u0628\u06cc \u06a9\u0627\u0646\u06a9\u0631\u060c \u0645\u062f\u06cc\u0631\u0627\u0646 \u0627\u062c\u0631\u0627\u06cc\u06cc <a href=\"https:\/\/www.scn2a.org\/\">\u0628\u0646\u06cc\u0627\u062f \u062e\u0627\u0646\u0648\u0627\u062f\u0647 SCN2A<\/a> \u0648 \u067e\u0631\u0648\u0698\u0647 \u0627\u06cc\u0646\u0686\u0633\u062a\u0648\u0646 \u0648 <a href=\"https:\/\/scn8aalliance.org\/\">\u0627\u062a\u062d\u0627\u062f \u0628\u06cc\u0646 \u0627\u0644\u0645\u0644\u0644\u06cc SCN8A<\/a> \u0628\u0647 \u062a\u0631\u062a\u06cc\u0628\u060c \u0628\u062d\u062b\u200c\u06af\u0631\u0627\u0646\u06cc \u0628\u0648\u062f\u0646\u062f \u06a9\u0647 \u062a\u062c\u0631\u0628\u0647 \u0632\u0646\u062f\u06af\u06cc \u062e\u0648\u062f \u0631\u0627 \u0628\u0647 \u0639\u0646\u0648\u0627\u0646 \u0645\u062f\u0627\u0641\u0639 \u0648 \u0648\u0627\u0644\u062f\u06cc\u0646 \u06a9\u0648\u062f\u06a9\u0627\u0646 \u0645\u0628\u062a\u0644\u0627 \u0628\u0647 DEE \u0634\u062f\u06cc\u062f \u0628\u0647 \u0627\u0634\u062a\u0631\u0627\u06a9 \u06af\u0630\u0627\u0634\u062a\u0646\u062f. \u067e\u0633 \u0627\u0632 \u0622\u0646 \u0627\u0631\u0627\u0626\u0647\u200c\u0647\u0627\u06cc\u06cc \u062f\u0631\u0628\u0627\u0631\u0647 \u0627\u0646\u062f\u0627\u0632\u0647\u200c\u06af\u06cc\u0631\u06cc \u062a\u0641\u0627\u0648\u062a \u0645\u0647\u0645 \u0628\u0627\u0644\u06cc\u0646\u06cc\u060c \u0627\u0633\u062a\u0641\u0627\u062f\u0647 \u0627\u0632 \u067e\u06cc\u0627\u0645\u062f\u0647\u0627\u06cc \u0641\u0631\u062f\u06cc \u0628\u0627 \u0627\u0633\u062a\u0641\u0627\u062f\u0647 \u0627\u0632 \u0645\u0642\u06cc\u0627\u0633\u200c\u0628\u0646\u062f\u06cc \u062f\u0633\u062a\u06cc\u0627\u0628\u06cc \u0628\u0647 \u0647\u062f\u0641 \u0648 \u0627\u0633\u062a\u0641\u0627\u062f\u0647 \u062c\u062f\u06cc\u062f \u0627\u0632 \u0645\u0639\u06cc\u0627\u0631\u0647\u0627\u06cc \u067e\u0627\u0633\u062e\u200c\u06af\u0648\u06cc\u06cc \u062f\u0631 \u0627\u0641\u0631\u0627\u062f\u06cc \u06a9\u0647 \u0639\u0645\u06cc\u0642\u0627\u064b \u062a\u062d\u062a \u062a\u0623\u062b\u06cc\u0631 \u0628\u06cc\u0645\u0627\u0631\u06cc \u0647\u0633\u062a\u0646\u062f\u060c \u0627\u0631\u0627\u0626\u0647 \u0634\u062f.\u00a0<\/p>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Natasha-Gatlinburg-scaled.jpg\" alt=\"Natasha Gatlinburg\" itemprop=\"image\" height=\"1440\" width=\"2560\" title=\"\u0646\u0627\u062a\u0627\u0634\u0627 \u06af\u0627\u062a\u0644\u06cc\u0646\u0628\u0648\u0631\u06af\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Anne-Gatlinburg-scaled.jpg\" alt=\"Anne Gatlinburg\" itemprop=\"image\" height=\"1440\" width=\"2560\" title=\"\u0622\u0646 \u06af\u0627\u062a\u0644\u06cc\u0646\u0628\u0648\u0631\u06af\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Chere-Gatlinburg-scaled.jpg\" alt=\"Chere Gatlinburg\" itemprop=\"image\" height=\"1440\" width=\"2560\" title=\"Chere Gatlinburg\" onerror=\"this.style.display='none'\"  \/>\n<h2>\n\t\t\u0686\u0647\u0627\u0631 \u067e\u0648\u0633\u062a\u0631 Latebreaker \u0627\u0631\u0627\u0626\u0647 \u0634\u062f\u0647 \u062f\u0631 AES 2022\n\t<\/h2>\n\t<p>\u062f\u0631 \u0633\u0627\u0644 2022\u060c \u062a\u06cc\u0645 \u062a\u062d\u0642\u06cc\u0642\u0627\u062a\u06cc Inchstone \u06cc\u06a9 \u0645\u0637\u0627\u0644\u0639\u0647 \u0622\u0632\u0645\u0627\u06cc\u0634\u06cc \u0631\u0627 \u0628\u0647 \u0647\u0645\u0631\u0627\u0647 \u0634\u0631\u06a9\u0627\u06cc \u0645\u0627 \u062f\u0631 \u0628\u0646\u06cc\u0627\u062f FamilieSCN2A \u0627\u0646\u062c\u0627\u0645 \u062f\u0627\u062f \u062a\u0627 \u06a9\u0627\u0631\u0628\u0631\u062f \u0627\u0628\u0632\u0627\u0631\u0647\u0627\u06cc \u0627\u0631\u0632\u06cc\u0627\u0628\u06cc \u0641\u0639\u0644\u06cc \u0631\u0627 \u0628\u0627 \u0627\u0628\u0632\u0627\u0631\u0647\u0627\u06cc\u06cc \u06a9\u0647 \u0639\u0645\u06cc\u0642\u0627\u064b \u062a\u062d\u062a \u062a\u0623\u062b\u06cc\u0631 DEE \u0647\u0627 \u0642\u0631\u0627\u0631 \u06af\u0631\u0641\u062a\u0647 \u0627\u0646\u062f \u0622\u0632\u0645\u0627\u06cc\u0634 \u06a9\u0646\u062f. \u0646\u062a\u0627\u06cc\u062c \u0627\u06cc\u0646 \u0645\u0637\u0627\u0644\u0639\u0647 \u062f\u0627\u0631\u0627\u06cc \u0646\u0631\u062e \u067e\u0630\u06cc\u0631\u0634 100% \u0628\u0631\u0627\u06cc \u0686\u06a9\u06cc\u062f\u0647 \u0647\u0627\u06cc \u062f\u06cc\u0631 \u0634\u06a9\u0633\u062a \u0627\u0631\u0627\u0626\u0647 \u0634\u062f\u0647 \u0628\u0647 \u06a9\u0646\u0641\u0631\u0627\u0646\u0633 AES \u062f\u0631 \u0633\u0627\u0644 2022 \u0628\u0648\u062f! \u0628\u0631\u0627\u06cc \u0628\u0632\u0631\u06af\u0646\u0645\u0627\u06cc\u06cc \u0647\u0631 \u067e\u0648\u0633\u062a\u0631 \u0631\u0648\u06cc \u0622\u0646\u0647\u0627 \u06a9\u0644\u06cc\u06a9 \u06a9\u0646\u06cc\u062f.<\/p>\n\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/AES-Poster-MCID-2022.pptx\" target=\"_blank\" rel=\"noopener\" itemprop=\"url\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/Jenny-Poster-2022.jpg\" alt=\"Jenny Poster 2022\" itemprop=\"image\" height=\"1522\" width=\"2136\" title=\"\u067e\u0648\u0633\u062a\u0631 \u062c\u0646\u06cc 2022\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/Ludwig-AES-2022.pptx\" target=\"_blank\" rel=\"noopener\" itemprop=\"url\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/Natasha-Poster-2022.jpg\" alt=\"Natasha Poster 2022\" itemprop=\"image\" height=\"1576\" width=\"2106\" title=\"\u067e\u0648\u0633\u062a\u0631 \u0646\u0627\u062a\u0627\u0634\u0627 2022\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/SCN2A-poster-AES-2022-Anne-Shawn.png\" alt=\"SCN2A poster AES 2022 Anne &amp; Shawn\" itemprop=\"image\" height=\"894\" width=\"1590\" title=\"\u067e\u0648\u0633\u062a\u0631 SCN2A AES 2022 Anne &amp; Shawn\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<a href=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2023\/01\/Ardea-AES-2022-Poster-Final.pdf\" target=\"_blank\" rel=\"noopener\" itemprop=\"url\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/Screen-Shot-2022-12-20-at-11.17.13-PM.png\" alt=\"Screen Shot 2022-12-20 at 11.17.13 PM\" itemprop=\"image\" height=\"1568\" width=\"2932\" title=\"\u0627\u0633\u06a9\u0631\u06cc\u0646 \u0634\u0627\u062a 20-12-2022 \u062f\u0631 \u0633\u0627\u0639\u062a 11.17.13 \u0628\u0639\u062f \u0627\u0632 \u0638\u0647\u0631\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n<h2>\n\t\tMembers of our team helped plan and presented at an Investigator Workshop on Non-Seizure Outcome Measures for DEEs &#8211; AES 2022\n\t<\/h2>\n\t\u0645\u0639\u06cc\u0627\u0631\u0647\u0627\u06cc \u067e\u06cc\u0627\u0645\u062f \u0645\u0639\u062a\u0628\u0631 \u0648 \u0645\u0639\u0646\u0627\u062f\u0627\u0631 \u0628\u0627\u0644\u06cc\u0646\u06cc \u0628\u0631\u0627\u06cc \u062a\u0648\u0633\u0639\u0647 \u062f\u0631\u0645\u0627\u0646\u200c\u0647\u0627\u06cc \u062c\u062f\u06cc\u062f \u062d\u06cc\u0627\u062a\u06cc \u0647\u0633\u062a\u0646\u062f. \u062a\u0634\u0646\u062c \u0628\u0647 \u0639\u0646\u0648\u0627\u0646 \u06cc\u06a9<br \/>\n\u067e\u06cc\u0627\u0645\u062f \u0627\u0648\u0644\u06cc\u0647 \u0645\u0645\u06a9\u0646 \u0627\u0633\u062a \u0647\u0645\u06cc\u0634\u0647 \u0628\u0631\u0627\u06cc \u0628\u06cc\u0645\u0627\u0631\u0627\u0646 \u0645\u0628\u062a\u0644\u0627 \u0628\u0647 \u0627\u0646\u0633\u0641\u0627\u0644\u0648\u067e\u0627\u062a\u06cc \u0631\u0634\u062f\u06cc \u0648 \u0635\u0631\u0639\u06cc \u0645\u0646\u0627\u0633\u0628 \u06cc\u0627 \u06a9\u0627\u0641\u06cc \u0646\u0628\u0627\u0634\u062f<br \/>\n(DEEs). \u0627\u06cc\u0646 \u06a9\u0627\u0631\u06af\u0627\u0647 \u06cc\u06a9 \u0645\u0631\u0648\u0631 \u06a9\u0644\u06cc \u0627\u0632 \u0686\u0627\u0644\u0634 \u0647\u0627 \u062f\u0631 \u0627\u0631\u0632\u06cc\u0627\u0628\u06cc \u0646\u062a\u0627\u06cc\u062c \u062f\u0631 DEE \u0647\u0627\u060c \u0648\u0636\u0639\u06cc\u062a \u0645\u0648\u062c\u0648\u062f \u0648<br \/>\n\u0627\u0642\u062f\u0627\u0645\u0627\u062a \u0648 \u0627\u0628\u0632\u0627\u0631\u0647\u0627\u06cc \u062f\u0631 \u062d\u0627\u0644 \u0638\u0647\u0648\u0631 \u0645\u0646\u0627\u0633\u0628 \u0628\u0631\u0627\u06cc DEE \u0647\u0627\u060c \u062a\u0648\u0633\u0639\u0647 \u0627\u0642\u062f\u0627\u0645\u0627\u062a \u062c\u062f\u06cc\u062f \u0648 \u0627\u0635\u0644\u0627\u062d \u0627\u0642\u062f\u0627\u0645\u0627\u062a \u0645\u0648\u062c\u0648\u062f \u0631\u0627 \u0645\u0648\u0631\u062f \u0628\u062d\u062b \u0642\u0631\u0627\u0631 \u0645\u06cc \u062f\u0647\u062f<br \/>\n\u0627\u0642\u062f\u0627\u0645\u0627\u062a\u06cc \u0628\u0631\u0627\u06cc \u062a\u0646\u0627\u0633\u0628 \u0628\u06cc\u0645\u0627\u0631\u0627\u0646 \u0628\u0627 DEE\u060c \u0648 \u0628\u0631\u062c\u0633\u062a\u0647 \u06a9\u0631\u062f\u0646 \u062a\u0644\u0627\u0634\u200c\u0647\u0627\u06cc \u062a\u062d\u0642\u06cc\u0642\u0627\u062a\u06cc \u062a\u062d\u062a \u0631\u0647\u0628\u0631\u06cc \u0628\u06cc\u0645\u0627\u0631\/\u0645\u0631\u0627\u0642\u0628 \u0628\u0631\u0627\u06cc \u062a\u0633\u0631\u06cc\u0639 \u062f\u0631 \u0645\u0648\u0627\u0631\u062f \u0636\u0631\u0648\u0631\u06cc<br \/>\n\u0628\u0647\u0628\u0648\u062f\u0647\u0627 \u0627\u0639\u0636\u0627\u06cc \u067e\u0627\u0646\u0644 \u0634\u0627\u0645\u0644 \u0633\u062e\u0646\u0631\u0627\u0646\u0627\u0646\u06cc \u0628\u0627 \u067e\u06cc\u0634\u06cc\u0646\u0647\u200c\u0647\u0627\u060c \u062a\u062c\u0631\u0628\u0647\u200c\u0647\u0627 \u0648 \u0646\u0642\u0634\u200c\u0647\u0627\u06cc \u0645\u062e\u062a\u0644\u0641 \u0647\u0633\u062a\u0646\u062f.\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/PXL_20221204_173257416-scaled.jpg\" alt=\"PXL_20221204_173257416\" itemprop=\"image\" height=\"1920\" width=\"2560\" title=\"PXL_20221204_173257416\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/PXL_20221204_170729415-1-169x300.jpg\" alt=\"PXL_20221204_170729415 (1)\" itemprop=\"image\" height=\"300\" width=\"169\" title=\"PXL_20221204_170729415 (1)\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/12\/PXL_20221204_180510796-scaled.jpg\" alt=\"PXL_20221204_180510796\" itemprop=\"image\" height=\"1440\" width=\"2560\" title=\"PXL_20221204_180510796\" onerror=\"this.style.display='none'\"  \/>\n<h2>\n\t\t\u0628\u0627\u0632\u062e\u0648\u0631\u062f \u06af\u0633\u062a\u0631\u062f\u0647 \u0627\u06cc \u0628\u0647 FDA \u062f\u0631 \u0645\u0648\u0631\u062f \u067e\u06cc\u0634 \u0646\u0648\u06cc\u0633 \u0631\u0627\u0647\u0646\u0645\u0627\u06cc \u0622\u0646\u0647\u0627 \u062f\u0631 \u0645\u0648\u0631\u062f \u062a\u0648\u0633\u0639\u0647 \u06cc\u0627 \u0627\u0635\u0644\u0627\u062d \u0627\u0631\u0632\u06cc\u0627\u0628\u06cc \u0647\u0627\u06cc \u067e\u06cc\u0627\u0645\u062f \u0628\u0627\u0644\u06cc\u0646\u06cc \u0627\u0631\u0633\u0627\u0644 \u06a9\u0631\u062f.\n\t<\/h2>\n\t<p>We submit these comments as a diverse group of stakeholders dedicated to improving outcome measures for those with severe developmental and epileptic encephalopathies (DEEs) and considerable medical complexity. We collaborate through The Inchstone Project (housed within DEE-P Connections)-a group of leading clinical outcome assessment (COA) researchers, clinicians, patient advocacy groups, and industry partners-with the goal of ensuring that there are outcome measures that can capture even the most minute progress by the most severely impacted individuals &#8211; the inchstones, not milestones. We believe that with the emergence of genetic therapies and the need to include those significantly impacted by these rare disorders in clinical trials, precision medicine requires precision measurement.<\/p>\n<p>\u0646\u0638\u0631\u0627\u062a \u0645\u0627 \u062e\u0644\u0627\u0635\u0647\u200c\u0627\u06cc \u0627\u0632 \u0686\u0627\u0644\u0634\u200c\u0647\u0627\u06cc\u06cc \u0631\u0627 \u06a9\u0647 \u0628\u06cc\u0645\u0627\u0631\u0627\u0646 \u0645\u0628\u062a\u0644\u0627 \u0628\u0647 DEEs \u0628\u0627 \u0622\u0646\u200c\u0647\u0627 \u0645\u0648\u0627\u062c\u0647 \u0647\u0633\u062a\u0646\u062f \u0627\u0631\u0627\u0626\u0647 \u0645\u06cc\u200c\u06a9\u0646\u062f \u0648 \u062c\u0646\u0628\u0647\u200c\u0647\u0627\u06cc \u062e\u0627\u0635\u06cc \u0627\u0632 \u0631\u0627\u0647\u0646\u0645\u0627\u06cc\u06cc \u0631\u0627 \u0628\u06cc\u0627\u0646 \u0645\u06cc\u200c\u06a9\u0646\u062f \u06a9\u0647 \u0645\u06cc\u200c\u062a\u0648\u0627\u0646\u062f \u0646\u06cc\u0627\u0632\u0647\u0627 \u0648 \u0686\u0627\u0644\u0634\u200c\u0647\u0627\u06cc \u0645\u062a\u0645\u0627\u06cc\u0632 \u0627\u0646\u062f\u0627\u0632\u0647\u200c\u06af\u06cc\u0631\u06cc \u062f\u0631 \u0627\u06cc\u0646 \u062c\u0645\u0639\u06cc\u062a \u0631\u0627 \u0628\u0647\u062a\u0631 \u0645\u0646\u0639\u06a9\u0633 \u06a9\u0646\u062f. \u0645\u0627 \u0628\u0631 \u0646\u06cc\u0627\u0632 \u0628\u0647 \u0627\u0642\u0627\u0645\u062a \u0628\u0631\u0627\u06cc \u0627\u0637\u0645\u06cc\u0646\u0627\u0646 \u0627\u0632 \u06af\u0646\u062c\u0627\u0646\u062f\u0646 \u0639\u0627\u062f\u0644\u0627\u0646\u0647 \u0622\u0646\u0647\u0627 \u062f\u0631 \u0647\u0631 \u062f\u0648 COA \u0648 \u0645\u0647\u0645\u062a\u0631 \u0627\u0632 \u0622\u0646\u060c \u0641\u0631\u0622\u06cc\u0646\u062f \u062a\u0648\u0633\u0639\u0647 \u0648 \u0627\u0631\u0632\u06cc\u0627\u0628\u06cc \u062f\u0627\u0631\u0648 \u062a\u0627\u06a9\u06cc\u062f \u0645\u06cc \u06a9\u0646\u06cc\u0645.<\/p>\n\t\t\t\t<a href=\"https:\/\/www.regulations.gov\/comment\/FDA-2022-D-1385-0025\" target=\"_blank\" rel=\"noopener\" itemprop=\"url\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2022\/10\/Screen-Shot-2022-10-03-at-12.04.51-PM-300x222.png\" alt=\"Click to read the full comments submitted\" itemprop=\"image\" height=\"222\" width=\"300\" title=\"\u0627\u0633\u06a9\u0631\u06cc\u0646 \u0634\u0627\u062a 03\/10\/2022 \u062f\u0631 \u0633\u0627\u0639\u062a 12.04.51 \u0628\u0639\u062f \u0627\u0632 \u0638\u0647\u0631\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\t\u0628\u0631\u0627\u06cc \u062e\u0648\u0627\u0646\u062f\u0646 \u06a9\u0627\u0645\u0644 \u0646\u0638\u0631\u0627\u062a \u0627\u0631\u0633\u0627\u0644\u06cc \u06a9\u0644\u06cc\u06a9 \u06a9\u0646\u06cc\u062f","protected":false},"excerpt":{"rendered":"<p>Inchstone Results To Date New publication: exploring novel cognition measures in scn2a-Related disorders We are excited to share a recent publication led by one of our Principal Investigators, Dr. Natasha&hellip;<\/p>","protected":false},"author":4,"featured_media":5562,"parent":2827,"menu_order":1,"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-4850","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 v28.4) - 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