{"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\/ug\/inchstone-project\/inchstone-results\/","title":{"rendered":"Inchstone \u062a\u06c8\u0631 \u0646\u06d5\u062a\u0649\u062c\u0649\u0633\u0649"},"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\tPreliminary Results from groundbreaking DEE Parents Speak Survey Shared with the Community\n\t<\/h2>\n\t<p>On this community update, The Inchstone Project Research Team shares progress on our efforts to create a range of assessment tools that can accurately measure progress in those more profoundly impacted by disorders and are consistently left unmeasured. In particular, the team provides an update on the data collected via our recent DEE Parents Speak survey from nearly 270 families on what their children CAN do, what their priorities are and results on how well the tools we are using capture the abilities of those profoundly impacted by DEEs.<\/p>\n\t<iframe title=\"The Inchstone Project Spring 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\tView the slides from the Community Update\n\t\t\t\t\t<\/a>\n<h2>\n\t\tPresentations at 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 - Responsivity\" 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\tTwo Seminal Publications\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=\"Screen Shot 2024-03-26 at 11.08.46 PM\" 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=\"Screen Shot 2024-03-26 at 11.15.32 PM\" 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>The Incshtone Project Research Team presented some early results of our DEE Parents Speak survey of caregivers across the DEE community sharing what their priorities are for their children, what abilities they have and testing a range of clinical assessment tools across more than 20 disorders.<\/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 poster\" 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>This symposium shared results from our pilot study conducted with the FamilieSCN2A Foundation. <i>Inchstone \u062a\u06c8\u0631\u0649 <\/i>and the SCN2A Clinical Trial Readiness Study played a critical role in designing, executing and supporting the collaborative, interdisciplinary, and multi-center research presented at this symposium. Leah Schust Myers and Gabi Conecker, Executive Directors of the <a href=\"https:\/\/www.scn2a.org\/\">FamilieSCN2A Foundation<\/a> and The Inchstone Project and the <a href=\"https:\/\/scn8aalliance.org\/\">International SCN8A Alliance<\/a> respectively, were discussants who shared their lived experience as advocates and parents of children with severe DEEs. This was followed by presentations about measuring Minimally Clinically Important Difference, the use of individualized outcomes using Goal Attainment Scaling and the novel use of responsivity measures in those profoundly impacted by disease.\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\tFour Latebreaker Posters Presented at AES 2022\n\t<\/h2>\n\t<p>In 2022, The Inchstone Research Team conducted a pilot study in conjunction with our partners at FamilieSCN2A Foundation to test the utility of current assessment tools with those profoundly impacted by DEEs. The results of this study had a 100% acceptance rate for late-breaking abstracts submitted to the AES conference in 2022! Click on each poster to enlarge them.<\/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 Poster 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 Poster 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 poster 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=\"Screen Shot 2022-12-20 at 11.17.13 PM\" 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\tClinically meaningful, validated outcome measures are critical for the development of novel therapeutics. Seizures as a<br \/>\nprimary outcome may not always be suitable or sufficient for patients with Developmental and Epileptic Encephalopathies<br \/>\n(DEEs). This workshop will present an overview of challenges in evaluating outcomes in DEEs, the state of existing and<br \/>\nemerging measures and tools appropriate for DEEs, discuss development of new measures and refinement of existing<br \/>\nmeasures to fit patients with DEE, and highlight patient\/ caregiver-led research efforts to accelerate urgently needed<br \/>\nimprovements. Panelists include speakers from diverse backgrounds, experience, and 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\tSubmitted extensive feedback to the FDA on their Draft Guidance on Developing or Modifying Clinical Outcome Assessments\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>Our comments provide a brief summary of the challenges patients with DEEs face and outline specific aspects of the guidance which could better reflect the distinct needs and challenges of measurement in this population. We highlight the need for accommodation to assure their equitable inclusion in both COAs and more importantly, the drug development and evaluation process.<\/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=\"Screen Shot 2022-10-03 at 12.04.51 PM\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n\t\tClick to read the full comments submitted","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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