{"id":1531,"date":"2024-12-19T18:21:21","date_gmt":"2024-12-19T23:21:21","guid":{"rendered":"https:\/\/www.med.unc.edu\/cidd\/?page_id=1531"},"modified":"2025-09-17T14:52:54","modified_gmt":"2025-09-17T18:52:54","slug":"brain-development-study-of-infants-with-angelman-syndrome-fragile-x-syndrome","status":"publish","type":"page","link":"https:\/\/www.med.unc.edu\/cidd\/research\/for-research-participants\/participate-in-our-research\/brain-development-study-of-infants-with-angelman-syndrome-fragile-x-syndrome\/","title":{"rendered":"Brain Development Study of Infants with Angelman Syndrome &amp; Fragile X Syndrome"},"content":{"rendered":"<p>UNC CIDD is recruiting infants with either Angelman syndrome (AS) or Fragile X syndrome (FXS) \u2013 under 24 months of age \u2013 for a new research study examining brain and behavioral development from 6 to 24 months of age in order to aid in the future development of better supports and treatments. You can help us identify the earliest brain and behavioral features of AS and FXS by participating in the first MRI research study of its kind.<\/p>\n<h2 class=\"www-somHeader\">Who is Eligible?<\/h2>\n<p>Infants between birth and 24 months of age with AS or FXS.<\/p>\n<h2 class=\"www-somHeader\">What Does Participation Involve?<\/h2>\n<ul>\n<li>Traveling to the University of North Carolina at Chapel Hill (UNC) for two in-person visits between<strong> 6 and 24 months of age<\/strong>.<\/li>\n<li>Behavioral and cognitive assessments at each visit (at no cost to the family) &#8211; with a summary of results for the family.<\/li>\n<li>A safe, non-invasive MRI brain scan during natural sleep (no anesthesia or sedation involved) &#8211; with a copy of the MRI for the family.<\/li>\n<\/ul>\n<h2 class=\"www-somHeader\">Goal of this Research<\/h2>\n<p>Studying the early brain and behavioral development of infants with AS and FXS could aid in the future development of better supports and treatments.<\/p>\n<h2 class=\"www-somHeader\">Compensation<\/h2>\n<p>All travel costs to Chapel Hill, North Carolina (airfare, hotel, rental car, meals) will be covered by the study. In addition, your family will be compensated up to $200 for participation in this study.<\/p>\n<h2 class=\"www-somHeader\">Questions<\/h2>\n<p>To enroll or ask questions, please contact:<\/p>\n<p>The Shen Lab (<a href=\"mailto:shenlab@med.unc.edu\">shenlab@med.unc.edu<\/a>)<\/p>\n<p>Phone: (919) 962-5942<\/p>\n<p>This study is led by Principal Investigator: Mark Shen, PhD, Assistant Professor of Psychiatry &amp; Neuroscience, UNC School of Medicine<\/p>\n<som-cell cell-info=\"{&quot;ID&quot;:1112,&quot;post_author&quot;:&quot;112631&quot;,&quot;post_date&quot;:&quot;2024-07-25 15:46:43&quot;,&quot;post_date_gmt&quot;:&quot;2024-07-25 19:46:43&quot;,&quot;post_content&quot;:&quot;&quot;,&quot;post_title&quot;:&quot;CT and AS Studies &#8211; Content Boxes&quot;,&quot;post_excerpt&quot;:&quot;&quot;,&quot;post_status&quot;:&quot;publish&quot;,&quot;comment_status&quot;:&quot;open&quot;,&quot;ping_status&quot;:&quot;closed&quot;,&quot;post_password&quot;:&quot;&quot;,&quot;post_name&quot;:&quot;ct-and-as-studies-content-boxes&quot;,&quot;to_ping&quot;:&quot;&quot;,&quot;pinged&quot;:&quot;&quot;,&quot;post_modified&quot;:&quot;2026-02-05 10:13:06&quot;,&quot;post_modified_gmt&quot;:&quot;2026-02-05 15:13:06&quot;,&quot;post_content_filtered&quot;:&quot;&quot;,&quot;post_parent&quot;:0,&quot;guid&quot;:&quot;https:\\\/\\\/www.med.unc.edu\\\/cidd\\\/cell\\\/ct-and-as-studies-content-boxes\\\/&quot;,&quot;menu_order&quot;:0,&quot;post_type&quot;:&quot;somcell&quot;,&quot;post_mime_type&quot;:&quot;&quot;,&quot;comment_count&quot;:&quot;0&quot;,&quot;filter&quot;:&quot;raw&quot;}\" cell-meta=\"{&quot;_upd_sortorder&quot;:[&quot;1&quot;],&quot;layout&quot;:[&quot;RepeatableBoxes&quot;],&quot;cellInformation&quot;:[&quot;{\\&quot;singleCellBlocks\\&quot;:{},\\&quot;repeatableBoxes\\&quot;:[{\\&quot;includeLink\\&quot;:1,\\&quot;boxText\\&quot;:\\&quot;CIDD Research for Me\\&quot;,\\&quot;useRichTextEditor\\&quot;:\\&quot;false\\&quot;,\\&quot;boxExcerptText\\&quot;:\\&quot;Explore this page to explore studies that are currently available at the CIDD, including Clinical Trials and Angelman Syndrome research.\\&quot;,\\&quot;boxUrl\\&quot;:\\&quot;https:\\\/\\\/researchforme.unc.edu\\\/index.php\\\/en\\\/study-list?dept=CIDD\\&quot;},{\\&quot;includeLink\\&quot;:1,\\&quot;boxUrl\\&quot;:\\&quot;https:\\\/\\\/www.angelman.org\\\/studies\\\/angelman-syndrome-natural-history-study\\\/\\&quot;,\\&quot;boxText\\&quot;:\\&quot;Angelman Syndrome Natural History Study\\&quot;,\\&quot;boxExcerptText\\&quot;:\\&quot;\\&quot;,\\&quot;useRichTextEditor\\&quot;:\\&quot;true\\&quot;,\\&quot;boxRichText\\&quot;:\\&quot;&lt;p&gt;UNC CIDD is a satellite site for the Angelman Syndrome (AS) Natural History Study (NHS), a longitudinal project that helps us understand the progression of symptoms and features associated with AS throughout an individual\\u2019s lifetime.&nbsp;&lt;\\\/p&gt;&lt;p&gt;&lt;strong&gt;Contact&lt;\\\/strong&gt;: &lt;a href=\\\\\\&quot;mailto:angelman@cidd.unc.edu\\\\\\&quot; rel=\\\\\\&quot;noopener noreferrer\\\\\\&quot; target=\\\\\\&quot;_blank\\\\\\&quot;&gt;Margaret DeRamus, MS, CCC-SLP&lt;\\\/a&gt;&lt;\\\/p&gt;\\&quot;},{\\&quot;includeLink\\&quot;:1,\\&quot;boxUrl\\&quot;:\\&quot;https:\\\/\\\/laddertotreatment.org\\\/\\&quot;,\\&quot;boxText\\&quot;:\\&quot;LADDER Learning Network\\&quot;,\\&quot;boxExcerptText\\&quot;:\\&quot;\\&quot;,\\&quot;useRichTextEditor\\&quot;:\\&quot;true\\&quot;,\\&quot;boxRichText\\&quot;:\\&quot;&lt;p&gt;UNC CIDD is a member of the LADDER to Learning Network. Linking Angelman and Dup15q Data for Expanded Research (LADDER) is a database platform that links data on individuals with Angelman or Dup15q syndromes collected from multiple sources, such as research studies, registries, caregiver reports, and clinic visits.&nbsp;&lt;\\\/p&gt;&lt;p&gt;&lt;strong&gt;Contact&lt;\\\/strong&gt;: &lt;a href=\\\\\\&quot;mailto:angelman@cidd.unc.edu\\\\\\&quot; rel=\\\\\\&quot;noopener noreferrer\\\\\\&quot; target=\\\\\\&quot;_blank\\\\\\&quot;&gt;Margaret DeRamus, MS, CCC-SLP&lt;\\\/a&gt; OR &lt;a href=\\\\\\&quot;mailto:dup15q@cidd.unc.edu\\\\\\&quot; rel=\\\\\\&quot;noopener noreferrer\\\\\\&quot; target=\\\\\\&quot;_blank\\\\\\&quot;&gt;Dup15q&lt;\\\/a&gt;.&lt;\\\/p&gt;\\&quot;},{\\&quot;includeLink\\&quot;:1,\\&quot;boxUrl\\&quot;:\\&quot;https:\\\/\\\/www.med.unc.edu\\\/cidd\\\/research\\\/for-research-participants\\\/participate-in-our-research\\\/brain-development-study-of-infants-with-angelman-syndrome-fragile-x-syndrome\\\/\\&quot;,\\&quot;boxText\\&quot;:\\&quot;Brain Development Study of Infants with Angelman Syndrome &amp; Fragile X Syndrome \\&quot;,\\&quot;boxExcerptText\\&quot;:\\&quot;UNC CIDD is recruiting infants with either Angelman syndrome or Fragile X syndrome \\u2013 under 24 months of age \\u2013 for a new research study examining brain and behavioral development from 6 to 24 months of age in order to aid in the future development of better supports and treatments.\\\\nContact: Zumin Chen (Study Coordinator)\\\\nEmail: zumin_chen@med.unc.edu\\\\nshenlab@med.unc.edu\\\\n\\&quot;,\\&quot;useRichTextEditor\\&quot;:\\&quot;true\\&quot;,\\&quot;boxRichText\\&quot;:\\&quot;&lt;p&gt;UNC CIDD is recruiting infants with either Angelman syndrome or Fragile X syndrome \\u2013 under 24 months of age \\u2013 for a new research study examining brain and behavioral development from 6 to 24 months of age in order to aid in the future development of better supports and treatments.&lt;\\\/p&gt;&lt;p&gt;&lt;strong&gt;Contact: &lt;\\\/strong&gt;&lt;a target=\\\\\\&quot;_blank\\\\\\&quot; href=\\\\\\&quot;mailto:shenlab@med.unc.edu\\\\\\&quot;&gt;shenlab@med.unc.edu&lt;\\\/a&gt;&lt;\\\/p&gt;\\&quot;}],\\&quot;boxCustomStyles\\&quot;:{\\&quot;textAlign\\&quot;:\\&quot;left\\&quot;,\\&quot;includeImage\\&quot;:0,\\&quot;includeImagePadding\\&quot;:1,\\&quot;imageAspectRatio\\&quot;:\\&quot;3\\\/2\\&quot;,\\&quot;includeLink\\&quot;:1,\\&quot;backgroundColor\\&quot;:\\&quot;lightGray\\&quot;,\\&quot;columnLayout\\&quot;:\\&quot;4\\&quot;},\\&quot;boxType\\&quot;:\\&quot;imageBoxes\\&quot;,\\&quot;boxStyleOption\\&quot;:\\&quot;content-boxes\\&quot;}&quot;],&quot;apiCallInformation&quot;:[&quot;{}&quot;]}\"><\/som-cell>\n<p>&nbsp;<\/p>\n<div class=\"row  oscitas-bootstrap-container\">\n<div class=\"col-lg-6 col-md-12 col-xs-12 col-sm-12 oscitas-bootstrap-container\">\n<a class=\"btn btn-primary btn-lg  btn-block  oscitas-bootstrap-container\" target=\"_self\" href=\"https:\/\/www.med.unc.edu\/cidd\/news\/\">Our Research in the News<\/a>\n<\/div>\n<div class=\"col-lg-6 col-md-12 col-xs-12 col-sm-12 oscitas-bootstrap-container\">\n<a class=\"btn btn-primary btn-lg btn-block  oscitas-bootstrap-container\" target=\"_self\" href=\"https:\/\/www.med.unc.edu\/cidd\/research\/meet-our-researchers\/\">Meet Our Researchers<\/a>\n<\/div>\n<\/div>\n<div class=\"bs-callout bs-callout-primary\">\n<h3>Contact Us<\/h3>\n<p>For questions about the <strong>Angelman Syndrome Natural History Study<\/strong> or the <strong>LADDER Learning Network<\/strong>, contact <a href=\"mailto:angelman@cidd.unc.edu\">Margaret DeRamus<\/a>.<\/p>\n<p>For questions about the <strong>CIDD Clinical Trials Program<\/strong>, contact <a href=\"mailto:Hannah.riehl@cidd.unc.edu\">Hannah Riehl<\/a>.<\/p>\n<p>For questions about the <strong>Brain Development Study of Infants with Angelman Syndrome &amp; Fragile X Syndrome<\/strong>, contact <a href=\"mailto:zumin_chen@med.unc.edu\">Zumin Chen.<\/a><\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>UNC CIDD is recruiting infants with either Angelman syndrome (AS) or Fragile X syndrome (FXS) \u2013 under 24 months of age \u2013 for a new research study examining brain and behavioral development from 6 to 24 months of age in order to aid in the future development of better supports and treatments. You can help &hellip; <a href=\"https:\/\/www.med.unc.edu\/cidd\/research\/for-research-participants\/participate-in-our-research\/brain-development-study-of-infants-with-angelman-syndrome-fragile-x-syndrome\/\" aria-label=\"Read more about Brain Development Study of Infants with Angelman Syndrome &amp; Fragile X Syndrome\">Read more<\/a><\/p>\n","protected":false},"author":55430,"featured_media":0,"parent":27,"menu_order":3,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-1531","page","type-page","status-publish","hentry","odd"],"acf":[],"_links_to":[],"_links_to_target":[],"_links":{"self":[{"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/pages\/1531","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/users\/55430"}],"replies":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/comments?post=1531"}],"version-history":[{"count":3,"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/pages\/1531\/revisions"}],"predecessor-version":[{"id":1860,"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/pages\/1531\/revisions\/1860"}],"up":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/pages\/27"}],"wp:attachment":[{"href":"https:\/\/www.med.unc.edu\/cidd\/wp-json\/wp\/v2\/media?parent=1531"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}