{"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\/pa_in\/inchstone-project\/inchstone-results\/","title":{"rendered":"\u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28 \u0a2a\u0a4d\u0a30\u0a4b\u0a1c\u0a48\u0a15\u0a1f \u0a28\u0a24\u0a40\u0a1c\u0a47"},"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=\"\u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28-\u0a39\u0a4b\u0a30\u0a40\u0a1c\u0a3c-\u0a2a\u0a42\u0a30\u0a3e \u0a30\u0a70\u0a17\" 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\tDEE \u0a26\u0a47 \u0a2e\u0a3e\u0a2a\u0a47 \u0a2c\u0a4b\u0a32\u0a23 \u0a35\u0a3e\u0a32\u0a47 \u0a38\u0a30\u0a35\u0a47\u0a16\u0a23 \u0a26\u0a47 \u0a38\u0a3c\u0a41\u0a30\u0a42\u0a06\u0a24\u0a40 \u0a28\u0a24\u0a40\u0a1c\u0a47 \u0a2d\u0a3e\u0a08\u0a1a\u0a3e\u0a30\u0a47 \u0a28\u0a3e\u0a32 \u0a38\u0a3e\u0a02\u0a1d\u0a47 \u0a15\u0a40\u0a24\u0a47 \u0a17\u0a0f \u0a39\u0a28\n\t<\/h2>\n\t<p>\u0a07\u0a38 \u0a15\u0a2e\u0a3f\u0a0a\u0a28\u0a3f\u0a1f\u0a40 \u0a05\u0a71\u0a2a\u0a21\u0a47\u0a1f &#039;\u0a24\u0a47, \u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28 \u0a2a\u0a4d\u0a30\u0a4b\u0a1c\u0a48\u0a15\u0a1f \u0a30\u0a3f\u0a38\u0a30\u0a1a \u0a1f\u0a40\u0a2e \u0a2e\u0a41\u0a32\u0a3e\u0a02\u0a15\u0a23 \u0a38\u0a3e\u0a27\u0a28\u0a3e\u0a02 \u0a26\u0a40 \u0a07\u0a71\u0a15 \u0a38\u0a40\u0a2e\u0a3e \u0a2c\u0a23\u0a3e\u0a09\u0a23 \u0a32\u0a08 \u0a38\u0a3e\u0a21\u0a47 \u0a2f\u0a24\u0a28\u0a3e\u0a02 &#039;\u0a24\u0a47 \u0a2a\u0a4d\u0a30\u0a17\u0a24\u0a40 \u0a28\u0a42\u0a70 \u0a38\u0a3e\u0a02\u0a1d\u0a3e \u0a15\u0a30\u0a26\u0a40 \u0a39\u0a48 \u0a1c\u0a4b \u0a35\u0a3f\u0a17\u0a3e\u0a5c\u0a3e\u0a02 \u0a26\u0a41\u0a06\u0a30\u0a3e \u0a35\u0a27\u0a47\u0a30\u0a47 \u0a21\u0a42\u0a70\u0a18\u0a47 \u0a2a\u0a4d\u0a30\u0a2d\u0a3e\u0a35 \u0a35\u0a3e\u0a32\u0a47 \u0a32\u0a4b\u0a15\u0a3e\u0a02 \u0a35\u0a3f\u0a71\u0a1a \u0a2a\u0a4d\u0a30\u0a17\u0a24\u0a40 \u0a28\u0a42\u0a70 \u0a38\u0a39\u0a40 \u0a22\u0a70\u0a17 \u0a28\u0a3e\u0a32 \u0a2e\u0a3e\u0a2a \u0a38\u0a15\u0a26\u0a47 \u0a39\u0a28 \u0a05\u0a24\u0a47 \u0a28\u0a3f\u0a30\u0a70\u0a24\u0a30 \u0a24\u0a4c\u0a30 &#039;\u0a24\u0a47 \u0a2e\u0a3e\u0a2a\u0a3f\u0a06 \u0a28\u0a39\u0a40\u0a02 \u0a1c\u0a3e\u0a02\u0a26\u0a47 \u0a39\u0a28\u0964 \u0a16\u0a3e\u0a38 \u0a24\u0a4c\u0a30 &#039;\u0a24\u0a47, \u0a1f\u0a40\u0a2e \u0a32\u0a17\u0a2d\u0a17 270 \u0a2a\u0a30\u0a3f\u0a35\u0a3e\u0a30\u0a3e\u0a02 \u0a24\u0a4b\u0a02 \u0a38\u0a3e\u0a21\u0a47 \u0a39\u0a3e\u0a32 \u0a39\u0a40 \u0a26\u0a47 \u0a21\u0a40\u0a08\u0a08 \u0a2a\u0a47\u0a30\u0a48\u0a02\u0a1f\u0a38 \u0a38\u0a2a\u0a40\u0a15 \u0a38\u0a30\u0a35\u0a47\u0a16\u0a23 \u0a26\u0a41\u0a06\u0a30\u0a3e \u0a07\u0a15\u0a71\u0a24\u0a30 \u0a15\u0a40\u0a24\u0a47 \u0a21\u0a47\u0a1f\u0a3e &#039;\u0a24\u0a47 \u0a07\u0a71\u0a15 \u0a05\u0a71\u0a2a\u0a21\u0a47\u0a1f \u0a2a\u0a4d\u0a30\u0a26\u0a3e\u0a28 \u0a15\u0a30\u0a26\u0a40 \u0a39\u0a48 \u0a15\u0a3f \u0a09\u0a28\u0a4d\u0a39\u0a3e\u0a02 \u0a26\u0a47 \u0a2c\u0a71\u0a1a\u0a47 \u0a15\u0a40 \u0a15\u0a30 \u0a38\u0a15\u0a26\u0a47 \u0a39\u0a28, \u0a09\u0a28\u0a4d\u0a39\u0a3e\u0a02 \u0a26\u0a40\u0a06\u0a02 \u0a24\u0a30\u0a1c\u0a40\u0a39\u0a3e\u0a02 \u0a15\u0a40 \u0a39\u0a28 \u0a05\u0a24\u0a47 \u0a28\u0a24\u0a40\u0a1c\u0a47 \u0a07\u0a38 \u0a17\u0a71\u0a32 &#039;\u0a24\u0a47 \u0a39\u0a28 \u0a15\u0a3f \u0a05\u0a38\u0a40\u0a02 \u0a09\u0a28\u0a4d\u0a39\u0a3e\u0a02 \u0a26\u0a40\u0a06\u0a02 \u0a2f\u0a4b\u0a17\u0a24\u0a3e\u0a35\u0a3e\u0a02 \u0a28\u0a42\u0a70 \u0a15\u0a3f\u0a70\u0a28\u0a40 \u0a1a\u0a70\u0a17\u0a40 \u0a24\u0a30\u0a4d\u0a39\u0a3e\u0a02 \u0a35\u0a30\u0a24 \u0a30\u0a39\u0a47 \u0a39\u0a3e\u0a02\u0964 DEEs \u0a26\u0a41\u0a06\u0a30\u0a3e \u0a2a\u0a4d\u0a30\u0a2d\u0a3e\u0a35\u0a3f\u0a24.<\/p>\n\t<iframe title=\"\u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28 \u0a2a\u0a4d\u0a30\u0a4b\u0a1c\u0a48\u0a15\u0a1f \u0a38\u0a2a\u0a30\u0a3f\u0a70\u0a17 2024 \u0a15\u0a2e\u0a3f\u0a0a\u0a28\u0a3f\u0a1f\u0a40 \u0a05\u0a71\u0a2a\u0a21\u0a47\u0a1f\" 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\u0a15\u0a2e\u0a3f\u0a0a\u0a28\u0a3f\u0a1f\u0a40 \u0a05\u0a71\u0a2a\u0a21\u0a47\u0a1f \u0a24\u0a4b\u0a02 \u0a38\u0a32\u0a3e\u0a08\u0a21\u0a3e\u0a02 \u0a26\u0a47\u0a16\u0a4b\n\t\t\t\t\t<\/a>\n<h2>\n\t\t\u0a07\u0a70\u0a1f\u0a30\u0a28\u0a48\u0a38\u0a3c\u0a28\u0a32 \u0a28\u0a3f\u0a0a\u0a30\u0a4b\u0a38\u0a3e\u0a08\u0a15\u0a4b\u0a32\u0a4b\u0a1c\u0a40\u0a15\u0a32 \u0a38\u0a4b\u0a38\u0a3e\u0a07\u0a1f\u0a40 2024 \u0a35\u0a3f\u0a16\u0a47 \u0a2a\u0a47\u0a38\u0a3c\u0a15\u0a3e\u0a30\u0a40\u0a06\u0a02\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=\"\u0a32\u0a41\u0a21\u0a35\u0a3f\u0a17 INS - \u0a1c\u0a35\u0a3e\u0a2c\u0a26\u0a47\u0a39\u0a40\" 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\u0a26\u0a4b \u0a38\u0a48\u0a2e\u0a40\u0a28\u0a32 \u0a2a\u0a4d\u0a30\u0a15\u0a3e\u0a38\u0a3c\u0a28\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=\"\u0a38\u0a15\u0a4d\u0a30\u0a40\u0a28 \u0a38\u0a3c\u0a4c\u0a1f 2024-03-26 \u0a30\u0a3e\u0a24 11.08.46 \u0a35\u0a1c\u0a47\" 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=\"\u0a38\u0a15\u0a4d\u0a30\u0a40\u0a28 \u0a38\u0a3c\u0a4c\u0a1f 2024-03-26 \u0a30\u0a3e\u0a24 11.15.32 \u0a35\u0a1c\u0a47\" 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>Incshtone \u0a2a\u0a4d\u0a30\u0a4b\u0a1c\u0a48\u0a15\u0a1f \u0a30\u0a3f\u0a38\u0a30\u0a1a \u0a1f\u0a40\u0a2e \u0a28\u0a47 \u0a38\u0a3e\u0a21\u0a47 DEE \u0a2a\u0a47\u0a30\u0a48\u0a02\u0a1f\u0a38 \u0a38\u0a2a\u0a40\u0a15 \u0a38\u0a30\u0a35\u0a47\u0a16\u0a23 \u0a26\u0a47 \u0a15\u0a41\u0a1d \u0a38\u0a3c\u0a41\u0a30\u0a42\u0a06\u0a24\u0a40 \u0a28\u0a24\u0a40\u0a1c\u0a47 \u0a2a\u0a47\u0a38\u0a3c \u0a15\u0a40\u0a24\u0a47 \u0a1c\u0a4b \u0a15\u0a3f DEE \u0a15\u0a2e\u0a3f\u0a0a\u0a28\u0a3f\u0a1f\u0a40 \u0a35\u0a3f\u0a71\u0a1a \u0a26\u0a47\u0a16\u0a2d\u0a3e\u0a32 \u0a15\u0a30\u0a28 \u0a35\u0a3e\u0a32\u0a3f\u0a06\u0a02 \u0a26\u0a47 \u0a38\u0a30\u0a35\u0a47\u0a16\u0a23 \u0a15\u0a30\u0a26\u0a47 \u0a39\u0a28 \u0a15\u0a3f \u0a09\u0a39\u0a28\u0a3e\u0a02 \u0a26\u0a40\u0a06\u0a02 \u0a24\u0a30\u0a1c\u0a40\u0a39\u0a3e\u0a02 \u0a09\u0a39\u0a28\u0a3e\u0a02 \u0a26\u0a47 \u0a2c\u0a71\u0a1a\u0a3f\u0a06\u0a02 \u0a32\u0a08 \u0a15\u0a40 \u0a39\u0a28, \u0a09\u0a39\u0a28\u0a3e\u0a02 \u0a15\u0a4b\u0a32 \u0a15\u0a3f\u0a39\u0a5c\u0a40\u0a06\u0a02 \u0a15\u0a3e\u0a2c\u0a32\u0a40\u0a05\u0a24\u0a3e\u0a02 \u0a39\u0a28 \u0a05\u0a24\u0a47 20 \u0a24\u0a4b\u0a02 \u0a35\u0a71\u0a27 \u0a35\u0a3f\u0a17\u0a3e\u0a5c\u0a3e\u0a02 \u0a35\u0a3f\u0a71\u0a1a \u0a15\u0a32\u0a40\u0a28\u0a3f\u0a15\u0a32 \u0a2e\u0a41\u0a32\u0a3e\u0a02\u0a15\u0a23 \u0a38\u0a3e\u0a27\u0a28\u0a3e\u0a02 \u0a26\u0a40 \u0a07\u0a71\u0a15 \u0a38\u0a3c\u0a4d\u0a30\u0a47\u0a23\u0a40 \u0a26\u0a40 \u0a1c\u0a3e\u0a02\u0a1a \u0a15\u0a30 \u0a30\u0a3f\u0a39\u0a3e \u0a39\u0a48\u0964<\/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=\"\u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28 AES 2023 \u0a2a\u0a4b\u0a38\u0a1f\u0a30\" 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>\u0a07\u0a38 \u0a38\u0a3f\u0a70\u0a2a\u0a4b\u0a1c\u0a3c\u0a40\u0a05\u0a2e \u0a28\u0a47 FamilieSCN2A \u0a2b\u0a3e\u0a0a\u0a02\u0a21\u0a47\u0a38\u0a3c\u0a28 \u0a28\u0a3e\u0a32 \u0a15\u0a40\u0a24\u0a47 \u0a17\u0a0f \u0a38\u0a3e\u0a21\u0a47 \u0a2a\u0a3e\u0a07\u0a32\u0a1f \u0a05\u0a27\u0a3f\u0a10\u0a28 \u0a26\u0a47 \u0a28\u0a24\u0a40\u0a1c\u0a47 \u0a38\u0a3e\u0a02\u0a1d\u0a47 \u0a15\u0a40\u0a24\u0a47\u0964 <i>\u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28 \u0a2a\u0a4d\u0a30\u0a4b\u0a1c\u0a48\u0a15\u0a1f <\/i>\u0a05\u0a24\u0a47 SCN2A \u0a15\u0a32\u0a40\u0a28\u0a3f\u0a15\u0a32 \u0a1f\u0a4d\u0a30\u0a3e\u0a07\u0a32 \u0a30\u0a48\u0a21\u0a40\u0a28\u0a47\u0a38 \u0a38\u0a1f\u0a71\u0a21\u0a40 \u0a28\u0a47 \u0a07\u0a38 \u0a38\u0a3f\u0a70\u0a2a\u0a4b\u0a1c\u0a3c\u0a40\u0a05\u0a2e \u0a35\u0a3f\u0a71\u0a1a \u0a2a\u0a47\u0a38\u0a3c \u0a15\u0a40\u0a24\u0a40 \u0a17\u0a08 \u0a38\u0a39\u0a3f\u0a2f\u0a4b\u0a17\u0a40, \u0a05\u0a70\u0a24\u0a30-\u0a05\u0a28\u0a41\u0a38\u0a3c\u0a3e\u0a38\u0a28\u0a40, \u0a05\u0a24\u0a47 \u0a2c\u0a39\u0a41-\u0a15\u0a47\u0a02\u0a26\u0a30\u0a40 \u0a16\u0a4b\u0a1c \u0a28\u0a42\u0a70 \u0a21\u0a3f\u0a1c\u0a3c\u0a3e\u0a08\u0a28 \u0a15\u0a30\u0a28, \u0a32\u0a3e\u0a17\u0a42 \u0a15\u0a30\u0a28 \u0a05\u0a24\u0a47 \u0a38\u0a2e\u0a30\u0a25\u0a28 \u0a15\u0a30\u0a28 \u0a35\u0a3f\u0a71\u0a1a \u0a07\u0a71\u0a15 \u0a2e\u0a39\u0a71\u0a24\u0a35\u0a2a\u0a42\u0a30\u0a23 \u0a2d\u0a42\u0a2e\u0a3f\u0a15\u0a3e \u0a28\u0a3f\u0a2d\u0a3e\u0a08\u0964 \u0a32\u0a40\u0a39 \u0a38\u0a3c\u0a42\u0a38\u0a1f \u0a2e\u0a3e\u0a07\u0a30\u0a38 \u0a05\u0a24\u0a47 \u0a17\u0a48\u0a2c\u0a40 \u0a15\u0a4b\u0a28\u0a47\u0a15\u0a30, \u0a26\u0a47 \u0a15\u0a3e\u0a30\u0a1c\u0a15\u0a3e\u0a30\u0a40 \u0a28\u0a3f\u0a30\u0a26\u0a47\u0a38\u0a3c\u0a15 <a href=\"https:\/\/www.scn2a.org\/\">FamilieSCN2A \u0a2b\u0a3e\u0a0a\u0a02\u0a21\u0a47\u0a38\u0a3c\u0a28<\/a> \u0a05\u0a24\u0a47 \u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28 \u0a2a\u0a4d\u0a30\u0a4b\u0a1c\u0a48\u0a15\u0a1f \u0a05\u0a24\u0a47 <a href=\"https:\/\/scn8aalliance.org\/\">\u0a05\u0a70\u0a24\u0a30\u0a30\u0a3e\u0a38\u0a3c\u0a1f\u0a30\u0a40 SCN8A \u0a05\u0a32\u0a3e\u0a07\u0a70\u0a38<\/a> \u0a15\u0a4d\u0a30\u0a2e\u0a35\u0a3e\u0a30, \u0a35\u0a3f\u0a1a\u0a3e\u0a30-\u0a35\u0a1f\u0a3e\u0a02\u0a26\u0a30\u0a3e \u0a15\u0a30\u0a28 \u0a35\u0a3e\u0a32\u0a47 \u0a38\u0a28 \u0a1c\u0a3f\u0a28\u0a4d\u0a39\u0a3e\u0a02 \u0a28\u0a47 \u0a17\u0a70\u0a2d\u0a40\u0a30 DEE \u0a35\u0a3e\u0a32\u0a47 \u0a2c\u0a71\u0a1a\u0a3f\u0a06\u0a02 \u0a26\u0a47 \u0a35\u0a15\u0a40\u0a32\u0a3e\u0a02 \u0a05\u0a24\u0a47 \u0a2e\u0a3e\u0a2a\u0a3f\u0a06\u0a02 \u0a26\u0a47 \u0a30\u0a42\u0a2a \u0a35\u0a3f\u0a71\u0a1a \u0a06\u0a2a\u0a23\u0a47 \u0a1c\u0a40\u0a35\u0a28 \u0a05\u0a28\u0a41\u0a2d\u0a35 \u0a28\u0a42\u0a70 \u0a38\u0a3e\u0a02\u0a1d\u0a3e \u0a15\u0a40\u0a24\u0a3e\u0964 \u0a07\u0a38 \u0a24\u0a4b\u0a02 \u0a2c\u0a3e\u0a05\u0a26 \u0a28\u0a3f\u0a0a\u0a28\u0a24\u0a2e \u0a15\u0a32\u0a40\u0a28\u0a3f\u0a15\u0a40 \u0a24\u0a4c\u0a30 &#039;\u0a24\u0a47 \u0a2e\u0a39\u0a71\u0a24\u0a35\u0a2a\u0a42\u0a30\u0a28 \u0a05\u0a70\u0a24\u0a30 \u0a28\u0a42\u0a70 \u0a2e\u0a3e\u0a2a\u0a23, \u0a1f\u0a40\u0a1a\u0a3e \u0a2a\u0a4d\u0a30\u0a3e\u0a2a\u0a24\u0a40 \u0a38\u0a15\u0a47\u0a32\u0a3f\u0a70\u0a17 \u0a26\u0a40 \u0a35\u0a30\u0a24\u0a4b\u0a02 \u0a15\u0a30\u0a26\u0a47 \u0a39\u0a4b\u0a0f \u0a35\u0a3f\u0a05\u0a15\u0a24\u0a40\u0a17\u0a24 \u0a28\u0a24\u0a40\u0a1c\u0a3f\u0a06\u0a02 \u0a26\u0a40 \u0a35\u0a30\u0a24\u0a4b\u0a02 \u0a05\u0a24\u0a47 \u0a2c\u0a3f\u0a2e\u0a3e\u0a30\u0a40 \u0a26\u0a41\u0a06\u0a30\u0a3e \u0a21\u0a42\u0a70\u0a18\u0a47 \u0a2a\u0a4d\u0a30\u0a2d\u0a3e\u0a35 \u0a35\u0a3e\u0a32\u0a47 \u0a32\u0a4b\u0a15\u0a3e\u0a02 \u0a35\u0a3f\u0a71\u0a1a \u0a1c\u0a35\u0a3e\u0a2c\u0a26\u0a47\u0a39\u0a40 \u0a09\u0a2a\u0a3e\u0a35\u0a3e\u0a02 \u0a26\u0a40 \u0a28\u0a35\u0a40\u0a02 \u0a35\u0a30\u0a24\u0a4b\u0a02 \u0a2c\u0a3e\u0a30\u0a47 \u0a2a\u0a47\u0a38\u0a3c\u0a15\u0a3e\u0a30\u0a40\u0a06\u0a02 \u0a26\u0a3e \u0a2a\u0a3e\u0a32\u0a23 \u0a15\u0a40\u0a24\u0a3e \u0a17\u0a3f\u0a06\u0964\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=\"\u0a28\u0a24\u0a3e\u0a38\u0a3c\u0a3e \u0a17\u0a48\u0a1f\u0a32\u0a3f\u0a28\u0a2c\u0a30\u0a17\" 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=\"\u0a10\u0a28 \u0a17\u0a48\u0a1f\u0a32\u0a3f\u0a28\u0a2c\u0a30\u0a17\" 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=\"\u0a1a\u0a47\u0a30\u0a47 \u0a17\u0a48\u0a1f\u0a32\u0a3f\u0a28\u0a2c\u0a30\u0a17\" onerror=\"this.style.display='none'\"  \/>\n<h2>\n\t\tAES 2022 &#039;\u0a24\u0a47 \u0a1a\u0a3e\u0a30 \u0a32\u0a47\u0a1f\u0a2c\u0a4d\u0a30\u0a47\u0a15\u0a30 \u0a2a\u0a4b\u0a38\u0a1f\u0a30 \u0a2a\u0a47\u0a38\u0a3c \u0a15\u0a40\u0a24\u0a47 \u0a17\u0a0f\n\t<\/h2>\n\t<p>2022 \u0a35\u0a3f\u0a71\u0a1a, \u0a07\u0a70\u0a1a\u0a38\u0a1f\u0a4b\u0a28 \u0a30\u0a3f\u0a38\u0a30\u0a1a \u0a1f\u0a40\u0a2e \u0a28\u0a47 \u0a2b\u0a48\u0a2e\u0a3f\u0a32\u0a40\u0a10\u0a38\u0a38\u0a40\u0a10\u0a282\u0a0f \u0a2b\u0a3e\u0a0a\u0a02\u0a21\u0a47\u0a38\u0a3c\u0a28 \u0a35\u0a3f\u0a71\u0a1a \u0a38\u0a3e\u0a21\u0a47 \u0a2d\u0a3e\u0a08\u0a35\u0a3e\u0a32\u0a3e\u0a02 \u0a26\u0a47 \u0a28\u0a3e\u0a32 \u0a2e\u0a3f\u0a32 \u0a15\u0a47 \u0a07\u0a71\u0a15 \u0a2a\u0a3e\u0a07\u0a32\u0a1f \u0a05\u0a27\u0a3f\u0a10\u0a28 \u0a15\u0a40\u0a24\u0a3e \u0a24\u0a3e\u0a02 \u0a1c\u0a4b \u0a2e\u0a4c\u0a1c\u0a42\u0a26\u0a3e \u0a2e\u0a41\u0a32\u0a3e\u0a02\u0a15\u0a23 \u0a38\u0a3e\u0a27\u0a28\u0a3e\u0a02 \u0a26\u0a40 \u0a09\u0a2a\u0a2f\u0a4b\u0a17\u0a24\u0a3e \u0a26\u0a40 \u0a1c\u0a3e\u0a02\u0a1a \u0a15\u0a40\u0a24\u0a40 \u0a1c\u0a3e \u0a38\u0a15\u0a47 \u0a1c\u0a4b DEE \u0a26\u0a41\u0a06\u0a30\u0a3e \u0a21\u0a42\u0a70\u0a18\u0a3e \u0a2a\u0a4d\u0a30\u0a2d\u0a3e\u0a35\u0a24 \u0a39\u0a28\u0964 \u0a07\u0a38 \u0a05\u0a27\u0a3f\u0a10\u0a28 \u0a26\u0a47 \u0a28\u0a24\u0a40\u0a1c\u0a3f\u0a06\u0a02 \u0a35\u0a3f\u0a71\u0a1a 2022 \u0a35\u0a3f\u0a71\u0a1a \u0a0f\u0a08\u0a10\u0a38 \u0a15\u0a3e\u0a28\u0a2b\u0a30\u0a70\u0a38 \u0a35\u0a3f\u0a71\u0a1a \u0a1c\u0a2e\u0a4d\u0a39\u0a3e \u0a15\u0a40\u0a24\u0a47 \u0a17\u0a0f \u0a32\u0a47\u0a1f-\u0a2c\u0a4d\u0a30\u0a47\u0a15\u0a3f\u0a70\u0a17 \u0a10\u0a2c\u0a38\u0a1f\u0a30\u0a48\u0a15\u0a1f\u0a3e\u0a02 \u0a32\u0a08 \u0a07\u0a71\u0a15 100% \u0a38\u0a35\u0a40\u0a15\u0a4d\u0a30\u0a3f\u0a24\u0a40 \u0a26\u0a30 \u0a38\u0a40! \u0a09\u0a39\u0a28\u0a3e\u0a02 \u0a28\u0a42\u0a70 \u0a35\u0a71\u0a21\u0a3e \u0a15\u0a30\u0a28 \u0a32\u0a08 \u0a39\u0a30\u0a47\u0a15 \u0a2a\u0a4b\u0a38\u0a1f\u0a30 &#039;\u0a24\u0a47 \u0a15\u0a32\u0a3f\u0a71\u0a15 \u0a15\u0a30\u0a4b\u0964<\/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=\"\u0a1c\u0a48\u0a28\u0a40 \u0a2a\u0a4b\u0a38\u0a1f\u0a30 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=\"\u0a28\u0a24\u0a3e\u0a38\u0a3c\u0a3e \u0a2a\u0a4b\u0a38\u0a1f\u0a30 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=\"SCN2A \u0a2a\u0a4b\u0a38\u0a1f\u0a30 AES 2022 \u0a10\u0a28\u0a40 \u0a05\u0a24\u0a47 \u0a38\u0a3c\u0a4c\u0a28\" 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=\"\u0a38\u0a15\u0a4d\u0a30\u0a40\u0a28 \u0a38\u0a3c\u0a4c\u0a1f 2022-12-20 \u0a30\u0a3e\u0a24 11.17.13 \u0a35\u0a1c\u0a47\" 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\u0a15\u0a32\u0a40\u0a28\u0a3f\u0a15\u0a32 \u0a24\u0a4c\u0a30 &#039;\u0a24\u0a47 \u0a05\u0a30\u0a25\u0a2a\u0a42\u0a30\u0a28, \u0a2a\u0a4d\u0a30\u0a2e\u0a3e\u0a23\u0a3f\u0a24 \u0a28\u0a24\u0a40\u0a1c\u0a47 \u0a09\u0a2a\u0a3e\u0a05 \u0a28\u0a3e\u0a35\u0a32 \u0a07\u0a32\u0a3e\u0a1c \u0a35\u0a3f\u0a17\u0a3f\u0a06\u0a28 \u0a26\u0a47 \u0a35\u0a3f\u0a15\u0a3e\u0a38 \u0a32\u0a08 \u0a2e\u0a39\u0a71\u0a24\u0a35\u0a2a\u0a42\u0a30\u0a28 \u0a39\u0a28\u0964 \u0a26\u0a4c\u0a30\u0a47 \u0a26\u0a47 \u0a24\u0a4c\u0a30 &#039;\u0a24\u0a47 \u0a0f<br \/>\n\u0a2a\u0a4d\u0a30\u0a3e\u0a07\u0a2e\u0a30\u0a40 \u0a28\u0a24\u0a40\u0a1c\u0a3e \u0a35\u0a3f\u0a15\u0a3e\u0a38 \u0a05\u0a24\u0a47 \u0a2e\u0a3f\u0a30\u0a17\u0a40 \u0a26\u0a47 \u0a10\u0a28\u0a38\u0a47\u0a2b\u0a48\u0a32\u0a4b\u0a2a\u0a48\u0a25\u0a40 \u0a35\u0a3e\u0a32\u0a47 \u0a2e\u0a30\u0a40\u0a1c\u0a3c\u0a3e\u0a02 \u0a32\u0a08 \u0a39\u0a2e\u0a47\u0a38\u0a3c\u0a3e \u0a22\u0a41\u0a15\u0a35\u0a3e\u0a02 \u0a1c\u0a3e\u0a02 \u0a15\u0a3e\u0a2b\u0a3c\u0a40 \u0a28\u0a39\u0a40\u0a02 \u0a39\u0a4b \u0a38\u0a15\u0a26\u0a3e \u0a39\u0a48<br \/>\n(\u0a21\u0a40.\u0a08.\u0a08.\u0a1c\u0a3c)\u0964 \u0a07\u0a39 \u0a35\u0a30\u0a15\u0a38\u0a3c\u0a3e\u0a2a DEEs \u0a35\u0a3f\u0a71\u0a1a \u0a28\u0a24\u0a40\u0a1c\u0a3f\u0a06\u0a02 \u0a26\u0a3e \u0a2e\u0a41\u0a32\u0a3e\u0a02\u0a15\u0a23 \u0a15\u0a30\u0a28 \u0a35\u0a3f\u0a71\u0a1a \u0a1a\u0a41\u0a23\u0a4c\u0a24\u0a40\u0a06\u0a02 \u0a26\u0a40 \u0a38\u0a70\u0a16\u0a47\u0a2a \u0a1c\u0a3e\u0a23\u0a15\u0a3e\u0a30\u0a40 \u0a2a\u0a47\u0a38\u0a3c \u0a15\u0a30\u0a47\u0a17\u0a40, \u0a2e\u0a4c\u0a1c\u0a42\u0a26\u0a3e \u0a38\u0a25\u0a3f\u0a24\u0a40 \u0a05\u0a24\u0a47<br \/>\nDEEs \u0a32\u0a08 \u0a09\u0a1a\u0a3f\u0a24 \u0a09\u0a2a\u0a3e\u0a05 \u0a05\u0a24\u0a47 \u0a38\u0a70\u0a26, \u0a28\u0a35\u0a47\u0a02 \u0a09\u0a2a\u0a3e\u0a35\u0a3e\u0a02 \u0a26\u0a47 \u0a35\u0a3f\u0a15\u0a3e\u0a38 \u0a05\u0a24\u0a47 \u0a2e\u0a4c\u0a1c\u0a42\u0a26\u0a3e \u0a26\u0a47 \u0a38\u0a41\u0a27\u0a3e\u0a30 &#039;\u0a24\u0a47 \u0a1a\u0a30\u0a1a\u0a3e \u0a15\u0a30\u0a4b<br \/>\nDEE \u0a35\u0a3e\u0a32\u0a47 \u0a2e\u0a30\u0a40\u0a1c\u0a3c\u0a3e\u0a02 \u0a28\u0a42\u0a70 \u0a2b\u0a3f\u0a71\u0a1f \u0a15\u0a30\u0a28 \u0a26\u0a47 \u0a09\u0a2a\u0a3e\u0a05, \u0a05\u0a24\u0a47 \u0a2e\u0a30\u0a40\u0a1c\u0a3c\/\u0a26\u0a47\u0a16\u0a2d\u0a3e\u0a32 \u0a15\u0a30\u0a28 \u0a35\u0a3e\u0a32\u0a47 \u0a26\u0a40 \u0a05\u0a17\u0a35\u0a3e\u0a08 \u0a35\u0a3e\u0a32\u0a47 \u0a16\u0a4b\u0a1c \u0a2f\u0a24\u0a28\u0a3e\u0a02 \u0a28\u0a42\u0a70 \u0a09\u0a1c\u0a3e\u0a17\u0a30 \u0a15\u0a30\u0a28 \u0a32\u0a08 \u0a24\u0a41\u0a30\u0a70\u0a24 \u0a32\u0a4b\u0a5c\u0a40\u0a02\u0a26\u0a47 \u0a24\u0a47\u0a1c\u0a3c\u0a40 \u0a32\u0a3f\u0a06\u0a09\u0a23 \u0a32\u0a08<br \/>\n\u0a38\u0a41\u0a27\u0a3e\u0a30 \u0a2a\u0a48\u0a28\u0a32\u0a3f\u0a38\u0a1f\u0a3e\u0a02 \u0a35\u0a3f\u0a71\u0a1a \u0a35\u0a3f\u0a2d\u0a3f\u0a70\u0a28 \u0a2a\u0a3f\u0a1b\u0a4b\u0a15\u0a5c, \u0a05\u0a28\u0a41\u0a2d\u0a35, \u0a05\u0a24\u0a47 \u0a2d\u0a42\u0a2e\u0a3f\u0a15\u0a3e\u0a35\u0a3e\u0a02 \u0a26\u0a47 \u0a2c\u0a41\u0a32\u0a3e\u0a30\u0a47 \u0a38\u0a3c\u0a3e\u0a2e\u0a32 \u0a39\u0a41\u0a70\u0a26\u0a47 \u0a39\u0a28\u0964\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\u0a15\u0a32\u0a40\u0a28\u0a3f\u0a15\u0a32 \u0a28\u0a24\u0a40\u0a1c\u0a3f\u0a06\u0a02 \u0a26\u0a47 \u0a2e\u0a41\u0a32\u0a3e\u0a02\u0a15\u0a23\u0a3e\u0a02 \u0a28\u0a42\u0a70 \u0a35\u0a3f\u0a15\u0a38\u0a24 \u0a15\u0a30\u0a28 \u0a1c\u0a3e\u0a02 \u0a38\u0a4b\u0a27\u0a23 \u0a2c\u0a3e\u0a30\u0a47 \u0a09\u0a39\u0a28\u0a3e\u0a02 \u0a26\u0a47 \u0a21\u0a30\u0a3e\u0a2b\u0a1f \u0a17\u0a3e\u0a08\u0a21\u0a48\u0a02\u0a38 &#039;\u0a24\u0a47 \u0a10\u0a71\u0a2b.\u0a21\u0a40.\u0a0f. \u0a28\u0a42\u0a70 \u0a35\u0a3f\u0a06\u0a2a\u0a15 \u0a2b\u0a40\u0a21\u0a2c\u0a48\u0a15 \u0a2a\u0a47\u0a38\u0a3c \u0a15\u0a40\u0a24\u0a3e\u0964\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>\u0a38\u0a3e\u0a21\u0a40\u0a06\u0a02 \u0a1f\u0a3f\u0a71\u0a2a\u0a23\u0a40\u0a06\u0a02 DEEs \u0a35\u0a3e\u0a32\u0a47 \u0a2e\u0a30\u0a40\u0a1c\u0a3c\u0a3e\u0a02 \u0a28\u0a42\u0a70 \u0a26\u0a30\u0a2a\u0a47\u0a38\u0a3c \u0a1a\u0a41\u0a23\u0a4c\u0a24\u0a40\u0a06\u0a02 \u0a26\u0a3e \u0a07\u0a71\u0a15 \u0a38\u0a70\u0a16\u0a47\u0a2a \u0a38\u0a3e\u0a30 \u0a2a\u0a4d\u0a30\u0a26\u0a3e\u0a28 \u0a15\u0a30\u0a26\u0a40\u0a06\u0a02 \u0a39\u0a28 \u0a05\u0a24\u0a47 \u0a2e\u0a3e\u0a30\u0a17\u0a26\u0a30\u0a38\u0a3c\u0a28 \u0a26\u0a47 \u0a16\u0a3e\u0a38 \u0a2a\u0a39\u0a3f\u0a32\u0a42\u0a06\u0a02 \u0a26\u0a40 \u0a30\u0a42\u0a2a\u0a30\u0a47\u0a16\u0a3e \u0a26\u0a3f\u0a70\u0a26\u0a40\u0a06\u0a02 \u0a39\u0a28 \u0a1c\u0a4b \u0a07\u0a38 \u0a06\u0a2c\u0a3e\u0a26\u0a40 \u0a35\u0a3f\u0a71\u0a1a \u0a2e\u0a3e\u0a2a \u0a26\u0a40\u0a06\u0a02 \u0a35\u0a71\u0a16\u0a30\u0a40\u0a06\u0a02 \u0a1c\u0a3c\u0a30\u0a42\u0a30\u0a24\u0a3e\u0a02 \u0a05\u0a24\u0a47 \u0a1a\u0a41\u0a23\u0a4c\u0a24\u0a40\u0a06\u0a02 \u0a28\u0a42\u0a70 \u0a2c\u0a3f\u0a39\u0a24\u0a30 \u0a22\u0a70\u0a17 \u0a28\u0a3e\u0a32 \u0a26\u0a30\u0a38\u0a3e\u0a09\u0a02\u0a26\u0a40\u0a06\u0a02 \u0a39\u0a28\u0964 \u0a05\u0a38\u0a40\u0a02 COA \u0a05\u0a24\u0a47 \u0a39\u0a4b\u0a30 \u0a35\u0a40 \u0a2e\u0a39\u0a71\u0a24\u0a35\u0a2a\u0a42\u0a30\u0a28 \u0a24\u0a4c\u0a30 &#039;\u0a24\u0a47, \u0a21\u0a30\u0a71\u0a17 \u0a35\u0a3f\u0a15\u0a3e\u0a38 \u0a05\u0a24\u0a47 \u0a2e\u0a41\u0a32\u0a3e\u0a02\u0a15\u0a23 \u0a2a\u0a4d\u0a30\u0a15\u0a3f\u0a30\u0a3f\u0a06 \u0a26\u0a4b\u0a35\u0a3e\u0a02 \u0a35\u0a3f\u0a71\u0a1a \u0a09\u0a28\u0a4d\u0a39\u0a3e\u0a02 \u0a26\u0a40 \u0a2c\u0a30\u0a3e\u0a2c\u0a30\u0a40 \u0a26\u0a40 \u0a38\u0a3c\u0a2e\u0a42\u0a32\u0a40\u0a05\u0a24 \u0a28\u0a42\u0a70 \u0a2f\u0a15\u0a40\u0a28\u0a40 \u0a2c\u0a23\u0a3e\u0a09\u0a23 \u0a32\u0a08 \u0a30\u0a3f\u0a39\u0a3e\u0a07\u0a38\u0a3c \u0a26\u0a40 \u0a1c\u0a3c\u0a30\u0a42\u0a30\u0a24 \u0a28\u0a42\u0a70 \u0a09\u0a1c\u0a3e\u0a17\u0a30 \u0a15\u0a30\u0a26\u0a47 \u0a39\u0a3e\u0a02\u0964<\/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=\"\u0a38\u0a15\u0a4d\u0a30\u0a40\u0a28 \u0a38\u0a3c\u0a4c\u0a1f 2022-10-03 \u0a26\u0a41\u0a2a\u0a39\u0a3f\u0a30 12.04.51 \u0a35\u0a1c\u0a47\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\t\u0a38\u0a2a\u0a41\u0a30\u0a26 \u0a15\u0a40\u0a24\u0a40\u0a06\u0a02 \u0a2a\u0a42\u0a30\u0a40\u0a06\u0a02 \u0a1f\u0a3f\u0a71\u0a2a\u0a23\u0a40\u0a06\u0a02 \u0a28\u0a42\u0a70 \u0a2a\u0a5c\u0a4d\u0a39\u0a28 \u0a32\u0a08 \u0a15\u0a32\u0a3f\u0a71\u0a15 \u0a15\u0a30\u0a4b","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 v28.3) - 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