{"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\/es_pe\/inchstone-project\/inchstone-results\/","title":{"rendered":"Resultados del proyecto 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\tResultados preliminares de la innovadora encuesta Parents Speak del DEE compartidos con la comunidad\n\t<\/h2>\n\t<p>En esta actualizaci\u00f3n de la comunidad, el equipo de investigaci\u00f3n del Proyecto Inchstone comparte el progreso de nuestros esfuerzos para crear una variedad de herramientas de evaluaci\u00f3n que puedan medir con precisi\u00f3n el progreso en aquellos m\u00e1s profundamente afectados por trastornos y que constantemente no se miden. En particular, el equipo proporciona una actualizaci\u00f3n de los datos recopilados a trav\u00e9s de nuestra reciente encuesta DEE Parents Speak de casi 270 familias sobre lo que sus hijos PUEDEN hacer, cu\u00e1les son sus prioridades y los resultados sobre qu\u00e9 tan bien las herramientas que estamos utilizando capturan las habilidades de aquellos profundamente. afectados por las EDE.<\/p>\n\t<iframe title=\"Actualizaci\u00f3n de la comunidad del Proyecto Inchstone de primavera de 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\tVer las diapositivas de la Actualizaci\u00f3n de la comunidad\n\t\t\t\t\t<\/a>\n<h2>\n\t\tPresentaciones en la Sociedad Internacional de Neuropsicolog\u00eda 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 - Responsividad\" 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\tDos publicaciones fundamentales\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=\"Captura de pantalla 2024-03-26 a las 11.08.46 p.m.\" 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=\"Captura de pantalla 2024-03-26 a las 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>El equipo de investigaci\u00f3n del Proyecto Incshtone present\u00f3 algunos de los primeros resultados de nuestra encuesta DEE Parents Speak de cuidadores de toda la comunidad DEE, compartiendo cu\u00e1les son sus prioridades para sus hijos, qu\u00e9 habilidades tienen y probando una variedad de herramientas de evaluaci\u00f3n cl\u00ednica en m\u00e1s de 20 trastornos.<\/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=\"P\u00f3ster 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>Este simposio comparti\u00f3 los resultados de nuestro estudio piloto realizado con la Fundaci\u00f3n FamilieSCN2A. <i>El proyecto Inchstone <\/i>y el estudio de preparaci\u00f3n para ensayos cl\u00ednicos SCN2A desempe\u00f1aron un papel fundamental en el dise\u00f1o, ejecuci\u00f3n y apoyo de la investigaci\u00f3n colaborativa, interdisciplinaria y multic\u00e9ntrica presentada en este simposio. Leah Schust Myers y Gabi Conecker, directoras ejecutivas de la <a href=\"https:\/\/www.scn2a.org\/\">Fundaci\u00f3n FamiliaSCN2A<\/a> y el Proyecto Inchstone y el <a href=\"https:\/\/scn8aalliance.org\/\">Alianza Internacional SCN8A<\/a> respectivamente, fueron participantes que compartieron sus experiencias vividas como defensores y padres de ni\u00f1os con EED graves. A esto le siguieron presentaciones sobre la medici\u00f3n de la diferencia m\u00ednimamente importante desde el punto de vista cl\u00ednico, el uso de resultados individualizados mediante la escala de logro de objetivos y el novedoso uso de medidas de capacidad de respuesta en aquellos profundamente afectados por la enfermedad.\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=\"Ana 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\tCuatro carteles de Latebreaker presentados en AES 2022\n\t<\/h2>\n\t<p>En 2022, el equipo de investigaci\u00f3n de Inchstone llev\u00f3 a cabo un estudio piloto junto con nuestros socios de la Fundaci\u00f3n FamilieSCN2A para probar la utilidad de las herramientas de evaluaci\u00f3n actuales con aquellos profundamente afectados por las DEE. \u00a1Los resultados de este estudio tuvieron una tasa de aceptaci\u00f3n de 100% para los res\u00famenes de \u00faltima hora enviados a la conferencia AES en 2022! Haga clic en cada cartel para ampliarlos.<\/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=\"P\u00f3ster Jenny 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=\"P\u00f3ster Natasha 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=\"Cartel 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=\"Captura de pantalla 20\/12\/2022 a las 17.11.13 p.m.\" 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\tLas medidas de resultados validadas y cl\u00ednicamente significativas son fundamentales para el desarrollo de nuevas terapias. Las convulsiones como<br \/>\nEl resultado primario puede no siempre ser adecuado o suficiente para pacientes con encefalopat\u00edas epil\u00e9pticas y del desarrollo.<br \/>\n(DEE). Este taller presentar\u00e1 una visi\u00f3n general de los desaf\u00edos en la evaluaci\u00f3n de resultados en las EDE, el estado de las tecnolog\u00edas existentes y<br \/>\nmedidas y herramientas emergentes apropiadas para las EDE, discutir el desarrollo de nuevas medidas y el perfeccionamiento de las existentes.<br \/>\nmedidas para adaptar a los pacientes con EDE y resaltar los esfuerzos de investigaci\u00f3n dirigidos por pacientes\/cuidadores para acelerar las necesidades urgentes<br \/>\nmejoras. Los panelistas incluyen oradores de diversos or\u00edgenes, experiencias y roles.\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\tEnvi\u00f3 amplios comentarios a la FDA sobre su borrador de orientaci\u00f3n sobre el desarrollo o modificaci\u00f3n de evaluaciones de resultados cl\u00ednicos.\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>Nuestros comentarios proporcionan un breve resumen de los desaf\u00edos que enfrentan los pacientes con EED y describen aspectos espec\u00edficos de la gu\u00eda que podr\u00edan reflejar mejor las distintas necesidades y desaf\u00edos de la medici\u00f3n en esta poblaci\u00f3n. Destacamos la necesidad de realizar adaptaciones para garantizar su inclusi\u00f3n equitativa tanto en los COA como, lo que es m\u00e1s importante, en el proceso de desarrollo y evaluaci\u00f3n de medicamentos.<\/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=\"Captura de pantalla 2022-10-03 a las 12.04.51 p.m.\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\tHaga clic para leer los comentarios completos enviados.","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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