{"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\/nb_no\/inchstone-project\/inchstone-results\/","title":{"rendered":"Inchstone-prosjektets resultater"},"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\tForel\u00f8pige resultater fra banebrytende DEE Parents Speak Survey delt med fellesskapet\n\t<\/h2>\n\t<p>I denne fellesskapsoppdateringen deler The Inchstone Project Research Team fremgang i arbeidet med \u00e5 lage en rekke vurderingsverkt\u00f8y som n\u00f8yaktig kan m\u00e5le fremgang hos de som er mer dypt p\u00e5virket av lidelser, og som konsekvent ikke blir m\u00e5lt. Spesielt gir teamet en oppdatering om dataene samlet inn via v\u00e5r nylige DEE Parents Speak-unders\u00f8kelse fra nesten 270 familier om hva barna deres KAN gj\u00f8re, hva deres prioriteringer er og resultater om hvor godt verkt\u00f8yene vi bruker fanger opp evnene til disse. p\u00e5virket av DEEs.<\/p>\n\t<iframe title=\"Inchstone Project V\u00e5r 2024 Community Update\" 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\tSe lysbildene fra fellesskapsoppdateringen\n\t\t\t\t\t<\/a>\n<h2>\n\t\tPresentasjoner ved International Neuropsychological Society 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 - Responsivitet\" 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\tTo banebrytende publikasjoner\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=\"Skjermbilde 2024-03-26 kl. 23.08.46\" 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=\"Skjermbilde 2024-03-26 kl. 23.15.32\" 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 Project Research Team presenterte noen tidlige resultater fra v\u00e5r DEE Parents Speak-unders\u00f8kelse av omsorgspersoner i hele DEE-samfunnet, og delte hva deres prioriteringer er for barna deres, hvilke evner de har og tester en rekke kliniske vurderingsverkt\u00f8y p\u00e5 tvers av mer enn 20 lidelser.<\/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=\"Inchstone AES 2023-plakat\" 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>Dette symposiet delte resultater fra v\u00e5r pilotstudie utf\u00f8rt med FamilieSCN2A Foundation. <i>Inchstone-prosjektet <\/i>og SCN2A Clinical Trial Readiness Study spilte en kritisk rolle i \u00e5 designe, utf\u00f8re og st\u00f8tte den samarbeidende, tverrfaglige og multisenterforskningen som ble presentert p\u00e5 dette symposiet. Leah Schust Myers og Gabi Conecker, administrerende direkt\u00f8rer i <a href=\"https:\/\/www.scn2a.org\/\">FamilieSCN2A Foundation<\/a> og The Inchstone Project og <a href=\"https:\/\/scn8aalliance.org\/\">Internasjonal SCN8A-allianse<\/a> var henholdsvis diskusjonanter som delte sin levde erfaring som talsmenn og foreldre til barn med alvorlig DEE. Dette ble etterfulgt av presentasjoner om m\u00e5ling av minimal klinisk viktig forskjell, bruk av individualiserte resultater ved bruk av m\u00e5loppn\u00e5elsesskalering og ny bruk av responstiltak hos personer som er dypt p\u00e5virket av sykdom.\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=\"Natasha Gatlinburg\" 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=\"Anne Gatlinburg\" 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\tFire Latebreaker-plakater presentert p\u00e5 AES 2022\n\t<\/h2>\n\t<p>I 2022 gjennomf\u00f8rte The Inchstone Research Team en pilotstudie i samarbeid med partnerne v\u00e5re ved FamilieSCN2A Foundation for \u00e5 teste nytten av n\u00e5v\u00e6rende vurderingsverkt\u00f8y med de som er dypt p\u00e5virket av DEEs. Resultatene av denne studien hadde en akseptgrad p\u00e5 100% for sene sammendrag sendt til AES-konferansen i 2022! Klikk p\u00e5 hver plakat for \u00e5 forst\u00f8rre dem.<\/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=\"Jenny-plakat 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=\"Natasha-plakat 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-plakat 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=\"Skjermbilde 2022-12-20 kl. 23.17.13\" 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\tKlinisk meningsfulle, validerte utfallsm\u00e5l er avgj\u00f8rende for utviklingen av nye terapeutiske midler. Anfall som en<br \/>\nprim\u00e6re utfall er kanskje ikke alltid egnet eller tilstrekkelig for pasienter med utviklingsmessige og epileptiske encefalopatier<br \/>\n(DEEs). Denne workshopen vil presentere en oversikt over utfordringer med \u00e5 evaluere resultater i DEEs, statusen til eksisterende og<br \/>\nnye tiltak og verkt\u00f8y som passer for DEEs, diskutere utvikling av nye tiltak og foredling av eksisterende<br \/>\ntiltak for \u00e5 tilpasse pasienter med DEE, og fremheve pasient-\/ omsorgsperson-ledet forskningsinnsats for \u00e5 akselerere presserende behov<br \/>\nforbedringer. Paneldeltakerne inkluderer foredragsholdere med ulik bakgrunn, erfaring og roller.\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\tSendt omfattende tilbakemeldinger til FDA om deres utkast til veiledning om utvikling eller endring av kliniske resultatvurderinger\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>V\u00e5re kommentarer gir en kort oppsummering av utfordringene pasienter med DEE m\u00f8ter og skisserer spesifikke aspekter ved veiledningen som bedre kan reflektere de distinkte behovene og utfordringene ved m\u00e5ling i denne populasjonen. Vi fremhever behovet for innkvartering for \u00e5 sikre deres rettferdige inkludering i b\u00e5de COAer og enda viktigere, legemiddelutviklings- og evalueringsprosessen.<\/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=\"Skjermbilde 2022-10-03 kl. 12.04.51\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\tKlikk for \u00e5 lese hele kommentarene som er sendt inn","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 v28.2) - 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