{"id":409,"date":"2023-12-07T14:16:47","date_gmt":"2023-12-07T20:16:47","guid":{"rendered":"https:\/\/wp.uthscsa.edu\/chromosome-18\/?page_id=409"},"modified":"2024-01-17T10:25:03","modified_gmt":"2024-01-17T16:25:03","slug":"our-program","status":"publish","type":"page","link":"https:\/\/wp.uthscsa.edu\/chromosome-18\/our-program\/","title":{"rendered":"Our Program"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row][vc_column width=&#8221;2\/3&#8243;][vc_column_text]The Chromosome 18 Clinical Research Center is conducting a life-time longitudinal study of \u00a0individuals with any chromosome 18 abnormality with the goal of improving their health and life.<\/p>\n<h2>Eligibility<\/h2>\n<p>Any individual of any age with a previously diagnosed chromosome 18 abnormality. This includes a diagnosis of 18p-, 18q-, Ring 18, Tetrasomy 18p, Trisomy 18, a chromosome 18 inversion or translocation. These genetic changes can be as small as involving a single gene on chromosome 18.<\/p>\n<h2>Program Design<\/h2>\n<p>This is a life-time longitudinal study. Individuals who have completed the Primary Enrollment are then offered the opportunity to \u00a0participate in other research activities.<\/p>\n<h4>Primary Enrollment<\/h4>\n<p>The Primary Enrollment involves first providing the diagnostic laboratory report that detected the chromosome 18 abnormality. Then discussing the program with the Program Manager, reading and then signing the informed consent documents. Sending other relevant medical records. Then we will send \u00a0you a kit for getting blood drawn on the person with a chromosome 18 abnormality and both of their biological parents (when available).<\/p>\n<h4>Subsidiary Studies<\/h4>\n<p>A participant must have completed the Primary Enrollment in order to be eligible to participate in any of these or future studies. These studies \u00a0could include:<\/p>\n<ul>\n<li>Periodic surveys and questionnaires to learn about developmental progress and behavior<\/li>\n<li>Requests for specific medial record if available<\/li>\n<li>A request for a skin sample<\/li>\n<li>An invitation to participate in a comprehensive clinical \u00a0research evaluation at our center<\/li>\n<\/ul>\n<h4>Benefits of Enrollment<\/h4>\n<ul>\n<li>Availability of study investigators to answer questions from participants and their health care providers<\/li>\n<li>Assistance in coordinating appointments \u00a0with study investigators at our center at the participants expense<\/li>\n<\/ul>\n<h4>Future studies<\/h4>\n<ul>\n<li>New studies will be developed over time as new \u00a0methods for evaluation are developed or as new questions arise<\/li>\n<li>In the future if clinical trials of novel treatments are undertaken all participants will be offered the opportunity to participate in such studies. There have been many active participants in the previous and ongoing studies.<\/li>\n<\/ul>\n<p>[\/vc_column_text][\/vc_column][vc_column width=&#8221;1\/3&#8243;]<nav id=\"subnav\" class=\"null\" aria-label=\"Sub navigation for Chromosome 18 Subnav\"><ul id=\"menu-chromosome-18-subnav\" class=\"subnav vertical menu drilldown\" data-drilldown><li id=\"menu-item-506\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-home menu-item-506\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/\">Home<\/a><\/li>\n<li id=\"menu-item-507\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-507\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/about-us\/\">About Us<\/a>\n<ul class=\"sub-menu\">\n\t<li id=\"menu-item-640\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-640\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/about-us\/our-team\/\">Our Team<\/a><\/li>\n\t<li id=\"menu-item-639\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-639\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/what-is-chromosome-18-abnormality\/\">What is a Chromosome 18 abnormality?<\/a><\/li>\n<\/ul>\n<\/li>\n<li id=\"menu-item-508\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-508\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/?page_id=408\">Research<\/a>\n<ul class=\"sub-menu\">\n\t<li id=\"menu-item-643\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-643\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/clinical-assessment\/\">Clinical Assessment<\/a>\n\t<ul class=\"sub-menu\">\n\t\t<li id=\"menu-item-644\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-644\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/clinical-assessment\/evaluation\/\">Evaluation Purpose and Procedures<\/a><\/li>\n\t<\/ul>\n<\/li>\n\t<li id=\"menu-item-645\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-645\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/clinical-dosage-map-instructions\/\">Clinical Dosage Map Instructions<\/a><\/li>\n\t<li id=\"menu-item-646\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-646\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/deletion-clinical-dosage-map-legend\/\">Deletion Clinical Dosage Map Legend<\/a><\/li>\n\t<li id=\"menu-item-647\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-647\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/research-1\/gene-dosage-track-legend\/\">Gene Dosage Track Legend<\/a><\/li>\n\t<li id=\"menu-item-648\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-648\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/research-1\/path-to-treatment\/\">Path to Treatment<\/a><\/li>\n\t<li id=\"menu-item-649\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-649\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/?page_id=561\">Phenotype Track<\/a>\n\t<ul class=\"sub-menu\">\n\t\t<li id=\"menu-item-858\" class=\"menu-item menu-item-type-custom menu-item-object-custom menu-item-858\"><a href=\"https:\/\/genome.ucsc.edu\/cgi-bin\/hgTracks?db=hg19&#038;lastVirtModeType=default&#038;lastVirtModeExtraState=&#038;virtModeType=default&#038;virtMode=0&#038;nonVirtPosition=&#038;position=chr18%3A1%2D78077248&#038;hgsid=1884264926_hn6iHMJzv9LO3nFmOdJiwp3soiMC\">Phenotype Deletion Map<\/a><\/li>\n\t\t<li id=\"menu-item-859\" class=\"menu-item menu-item-type-custom menu-item-object-custom menu-item-859\"><a href=\"https:\/\/genome.ucsc.edu\/cgi-bin\/hgTracks?db=hg19&#038;lastVirtModeType=default&#038;lastVirtModeExtraState=&#038;virtModeType=default&#038;virtMode=0&#038;nonVirtPosition=&#038;position=chr18%3A1%2D78077248&#038;hgsid=1884265652_EZW3C1gYccZy8K8mq1vjkNvPnA1w\">Phenotype Duplication Map<\/a><\/li>\n\t<\/ul>\n<\/li>\n\t<li id=\"menu-item-735\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-735\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/research-1\/publications\/\">Publications<\/a><\/li>\n<\/ul>\n<\/li>\n<li id=\"menu-item-509\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-509\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/our-program\/\">Our Program<\/a>\n<ul class=\"sub-menu\">\n\t<li id=\"menu-item-650\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-650\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/our-program\/current-studies\/\">Current Studies<\/a><\/li>\n<\/ul>\n<\/li>\n<li id=\"menu-item-510\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-510\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/enrollment\/\">Enrollment<\/a><\/li>\n<li id=\"menu-item-511\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-511\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/\">Resources<\/a>\n<ul class=\"sub-menu\">\n\t<li id=\"menu-item-651\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-651\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/\">Clinical Management Guides<\/a>\n\t<ul class=\"sub-menu\">\n\t\t<li id=\"menu-item-666\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-666\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/18q-summary\/\">What is 18q: A Sixty-Second Summary<\/a><\/li>\n\t\t<li id=\"menu-item-656\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-656\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/distal-18q-treatment-and-surveillance\/\">Distal 18q- Treatment and Surveillance<\/a><\/li>\n\t\t<li id=\"menu-item-657\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-657\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/proximal-18q-treatment-and-surveillance\/\">Proximal 18q- Treatment and Surveillance<\/a><\/li>\n\t\t<li id=\"menu-item-667\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-667\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/ring-18-summary\/\">What is Ring 18: A Sixty-Second Summary<\/a><\/li>\n\t\t<li id=\"menu-item-659\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-659\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/ring-18-treatment-and-surveillance-2\/\">Ring 18- Treatment and Surveillance<\/a><\/li>\n\t\t<li id=\"menu-item-850\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-850\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/ring-18-distal-treatment-and-surveillance\/\">Ring 18 Distal- Treatment and Surveillance<\/a><\/li>\n\t\t<li id=\"menu-item-665\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-665\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/18p-summary\/\">What is 18p: A Sixty-Second Summary<\/a><\/li>\n\t\t<li id=\"menu-item-655\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-655\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/18p-treatment-surveillance\/\">18p- Treatment and Surveillance<\/a><\/li>\n\t\t<li id=\"menu-item-660\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-660\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/tetrasomy-18p-summary\/\">Tetrasomy 18p: Sixty-Second Summary<\/a>\n\t\t<ul class=\"sub-menu\">\n\t\t\t<li id=\"menu-item-662\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-662\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/tetrasomy-18p-treatment-and-surveillance-2\/initial-evaluations\/\">Initial Evaluations After Diagnosis<\/a><\/li>\n\t\t\t<li id=\"menu-item-663\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-663\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/tetrasomy-18p-treatment-and-surveillance-2\/potential-conditions\/\">Potential Conditions in a Neonate<\/a><\/li>\n\t\t\t<li id=\"menu-item-661\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-661\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/tetrasomy-18p-treatment-and-surveillance-2\/immediate-referrals\/\">Immediate Referrals to<\/a><\/li>\n\t\t<\/ul>\n<\/li>\n\t\t<li id=\"menu-item-851\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-851\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/tetrasomy-18p-treatment-and-surveillance-2\/\">Tetrasomy 18p: Treatment and Surveillance<\/a><\/li>\n\t\t<li id=\"menu-item-668\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-668\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/trisomy-18p-summary\/\">What is Trisomy 18p: A Sixty-Second Summary<\/a><\/li>\n\t\t<li id=\"menu-item-664\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-664\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/resources\/clinical-management-guides\/trisomy-18p-treatment-and-surveillance\/\">Trisomy 18p: Treatment and Surveillance<\/a><\/li>\n\t<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<li id=\"menu-item-512\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-512\"><a href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/contact-us\/\">Contact Us<\/a><\/li>\n<li id=\"menu-item-669\" class=\"menu-item menu-item-type-custom menu-item-object-custom menu-item-669\"><a href=\"https:\/\/www.chromosome18.org\/\">Chromosome 18 Registry &amp; Research Society<\/a><\/li>\n<\/ul><\/nav> \n        <a class=\"callout panel-mobile text-center colorized\" href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/our-program\/current-studies\/\" title=\"Current Studies\" >\n            <span class=\"fa-stack fa-2x\">\n            <i class=\"fas fa-circle fa-stack-2x\"><\/i>\n            <i class=\"fas fa-fas fa-book-open fa-stack-1x fa-inverse\"><\/i>\n            <\/span><h3 class=\" \">Current Studies<\/h3>\n        <\/a> \n        <a class=\"callout panel-mobile text-center color darken\" href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/clinical-assessment\/\" title=\"Clinical Assessment\" >\n            <span class=\"fa-stack fa-2x\">\n            <i class=\"fas fa-circle fa-stack-2x\"><\/i>\n            <i class=\"fas fa-far fa-check-square fa-stack-1x fa-inverse\"><\/i>\n            <\/span><h3 class=\" \">Clinical Assessment<\/h3>\n        <\/a> \n        <a class=\"callout panel-mobile text-center color blue\" href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/enrollment\/\" title=\"Enrollment\" >\n            <span class=\"fa-stack fa-2x\">\n            <i class=\"fas fa-circle fa-stack-2x\"><\/i>\n            <i class=\"fas fa-fas fa-arrow-alt-circle-right fa-stack-1x fa-inverse\"><\/i>\n            <\/span><h3 class=\" \">Enrollment<\/h3>\n        <\/a>[\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row][vc_column width=&#8221;2\/3&#8243;][vc_column_text]The Chromosome 18 Clinical Research Center is conducting a life-time longitudinal study of \u00a0individuals with any chromosome 18 abnormality with the goal of improving their health and life. Eligibility Any individual of any age with a previously diagnosed chromosome 18 abnormality. This includes a diagnosis of 18p-, 18q-, Ring 18, Tetrasomy 18p, Trisomy 18, [&hellip;]<\/p>\n","protected":false},"author":38,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"categories":[],"class_list":["post-409","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Our Program - Chromosome 18<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/wp.uthscsa.edu\/chromosome-18\/our-program\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our Program - Chromosome 18\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column width=&#8221;2\/3&#8243;][vc_column_text]The Chromosome 18 Clinical Research Center is conducting a life-time longitudinal study of \u00a0individuals with any chromosome 18 abnormality with the goal of improving their health and life. 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