{"id":21664,"date":"2025-08-15T12:00:26","date_gmt":"2025-08-15T16:00:26","guid":{"rendered":"https:\/\/www.med.unc.edu\/neurology\/?page_id=21664"},"modified":"2025-08-15T12:00:26","modified_gmt":"2025-08-15T16:00:26","slug":"drpla-center-of-excellence","status":"publish","type":"page","link":"https:\/\/www.med.unc.edu\/neurology\/divisions\/child-neurology-1\/patients\/drpla-center-of-excellence\/","title":{"rendered":"DRPLA Center of Excellence"},"content":{"rendered":"<som-cell cell-info=\"{&quot;ID&quot;:21676,&quot;post_author&quot;:&quot;68462&quot;,&quot;post_date&quot;:&quot;2025-08-15 11:48:53&quot;,&quot;post_date_gmt&quot;:&quot;2025-08-15 15:48:53&quot;,&quot;post_content&quot;:&quot;&quot;,&quot;post_title&quot;:&quot;DRPLA CoE Mission&quot;,&quot;post_excerpt&quot;:&quot;&quot;,&quot;post_status&quot;:&quot;publish&quot;,&quot;comment_status&quot;:&quot;closed&quot;,&quot;ping_status&quot;:&quot;closed&quot;,&quot;post_password&quot;:&quot;&quot;,&quot;post_name&quot;:&quot;drpla-coe-mission&quot;,&quot;to_ping&quot;:&quot;&quot;,&quot;pinged&quot;:&quot;&quot;,&quot;post_modified&quot;:&quot;2025-08-15 11:50:37&quot;,&quot;post_modified_gmt&quot;:&quot;2025-08-15 15:50:37&quot;,&quot;post_content_filtered&quot;:&quot;&quot;,&quot;post_parent&quot;:0,&quot;guid&quot;:&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/cell\\\/drpla-coe-mission\\\/&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;_wpv_contains_gutenberg_views&quot;:[&quot;&quot;],&quot;_upd_sortorder&quot;:[&quot;1&quot;],&quot;layout&quot;:[&quot;SingleCellBlocks&quot;],&quot;cellInformation&quot;:[&quot;{\\&quot;singleCellBlocks\\&quot;:{\\&quot;cellHeader\\&quot;:\\&quot;Mission\\&quot;,\\&quot;cellContent\\&quot;:\\&quot;The DRPLA Center of Excellence at UNC Neurology is dedicated to providing expert, compassionate care for individuals affected by Dentatorubral-pallidoluysian atrophy (DRPLA). Recognizing the complexity and impact of this rare condition, we strive to support patients and families through specialized clinical services, ongoing research, and collaboration with CureDRPLA to advance understanding and move closer to effective treatments.\\&quot;,\\&quot;backgroundColor\\&quot;:\\&quot;mediumBlue\\&quot;},\\&quot;repeatableBoxes\\&quot;:[],\\&quot;blockType\\&quot;:\\&quot;bannerBlocks\\&quot;,\\&quot;blockStyle\\&quot;:\\&quot;deptHeader\\&quot;}&quot;],&quot;apiCallInformation&quot;:[&quot;{}&quot;]}\"><\/som-cell>\n<hr \/>\n<div class=\"row  oscitas-bootstrap-container\">\n<div class=\"col-lg-4 col-md-4 col-xs-12 col-sm-12 oscitas-bootstrap-container\">\n<img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-21677 aligncenter\" src=\"https:\/\/www.med.unc.edu\/neurology\/wp-content\/uploads\/sites\/716\/2025\/08\/HeaderLogo_transparent.png\" alt=\"\" width=\"295\" height=\"131\" \/><\/div>\n<div class=\"col-lg-4 col-md-4 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=\"#cureDRPLA\">CureDRPLA<\/a>\n<a class=\"btn btn-success btn-lg btn-block  oscitas-bootstrap-container\" target=\"_self\" href=\"#DRPLA-research\">Research<\/a>\n<a class=\"btn btn-default btn-lg btn-block  oscitas-bootstrap-container\" target=\"_self\" href=\"#DRPLA-referral\">Referral<\/a>\n<\/div>\n<div class=\"col-lg-4 col-md-4 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=\"#DRPLA-services\">Services<\/a>\n<a class=\"btn btn-success btn-lg btn-block  oscitas-bootstrap-container\" target=\"_self\" href=\"#DRPLA-team\">Team<\/a>\n<a class=\"btn btn-default btn-lg btn-block  oscitas-bootstrap-container\" target=\"_self\" href=\"https:\/\/www.unchealth.org\/care-services\/locations\/unc-hospitals-childrens-specialty-clinics-in-chapel-hill-at-carolina-pointe-ii\">Location<\/a><\/div>\n<\/div>\n<h2 id=\"cureDRPLA\"><h2 class=\"section-som\"><span>CureDRPLA<\/span><\/h2><\/h2>\n<p>DRPLA is a complex and heterogeneous condition that can impact many aspects of everyday life, thus individuals affected and their families require access to specialized care to better understand this condition and find the best way to manage it while a treatment becomes available.<\/p>\n<p>CureDRPLA has launched this initiative to award an accreditation of \u201cDRPLA Centers of Excellence\u201d to those neurologists who have experience in DRPLA care and commit to supporting the work of our organization. In addition to providing expert clinical care and identifying the various needs of those diagnosed with DRPLA, the Centers must have an ongoing interest in research into DRPLA. With this initiative, we aim to help families more easily identify clinical experts in DRPLA for their healthcare needs.<\/p>\n<div class=\"row  oscitas-bootstrap-container\">\n<div class=\"col-lg-6 col-md-6 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:\/\/curedrpla.org\/en\/about-drpla\/\">Learn More<\/a>\n<\/div>\n<div class=\"col-lg-6 col-md-6 col-xs-12 col-sm-12 oscitas-bootstrap-container\">\n<a class=\"btn btn-success btn-lg btn-block  oscitas-bootstrap-container\" target=\"_self\" href=\"https:\/\/curedrpla.org\/en\/\">CureDRPLA Foundation<\/a>\n<\/div>\n<\/div>\n<h2 id=\"DRPLA-services\"><h2 class=\"section-som\"><span>Services<\/span><\/h2><\/h2>\n<p>At the UNC DRPLA Center of Excellence, we provide compassionate, comprehensive care through a multidisciplinary team of specialists in neurology, rehabilitation medicine, physical, occupational, and speech therapy, nutrition, and social work. Our dedicated nurse care coordinator supports families throughout their journey. We are committed to delivering personalized care and coordinated services to meet the unique needs of each patient and family.<\/p>\n<h3>Neurogenetic Services<\/h3>\n<p>Center patients benefit from specialized neurogenetic services designed to provide clarity, support, and personalized care. Our team includes neurologists, genetic counselors, and researchers who work together to evaluate and diagnose neurogenetic conditions through comprehensive assessments, including genetic testing and counseling. Each case is reviewed in clinical case conferences to ensure thoughtful, collaborative decision-making.<\/p>\n<h2 id=\"DRPLA-research\"><h2 class=\"section-som\"><span>Research<\/span><\/h2><\/h2>\n<som-cell cell-info=\"{&quot;ID&quot;:21674,&quot;post_author&quot;:&quot;68462&quot;,&quot;post_date&quot;:&quot;2025-08-15 11:42:29&quot;,&quot;post_date_gmt&quot;:&quot;2025-08-15 15:42:29&quot;,&quot;post_content&quot;:&quot;&quot;,&quot;post_title&quot;:&quot;DRPLA CoE Research&quot;,&quot;post_excerpt&quot;:&quot;&quot;,&quot;post_status&quot;:&quot;publish&quot;,&quot;comment_status&quot;:&quot;closed&quot;,&quot;ping_status&quot;:&quot;closed&quot;,&quot;post_password&quot;:&quot;&quot;,&quot;post_name&quot;:&quot;drpla-coe-research&quot;,&quot;to_ping&quot;:&quot;&quot;,&quot;pinged&quot;:&quot;&quot;,&quot;post_modified&quot;:&quot;2025-08-15 11:46:46&quot;,&quot;post_modified_gmt&quot;:&quot;2025-08-15 15:46:46&quot;,&quot;post_content_filtered&quot;:&quot;&quot;,&quot;post_parent&quot;:0,&quot;guid&quot;:&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/cell\\\/drpla-coe-research\\\/&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;_wpv_contains_gutenberg_views&quot;:[&quot;&quot;],&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;DRPLA Natural History &amp; Biomarker Study\\&quot;,\\&quot;boxExcerptText\\&quot;:\\&quot;This study will collect health information from DRPLA individuals over three years to understand how this condition develops over time. The study also recruits participants without DRPLA, so that they are able to compare how individuals with DRPLA differ from those without. Participating in this study will involve annual appointments at the clinics where the neurologist will do some clinical assessments (e.g. ataxia scales, brain MRI, blood collection, etc.).\\&quot;,\\&quot;boxUrl\\&quot;:\\&quot;https:\\\/\\\/curedrpla.org\\\/en\\\/2022\\\/06\\\/30\\\/we-are-funding-a-natural-history-study-for-drpla\\\/\\&quot;,\\&quot;boxImage\\&quot;:\\&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/wp-content\\\/uploads\\\/sites\\\/716\\\/2017\\\/06\\\/DRPLA-Natural-History-and-Biomarker-Study.png\\&quot;},{\\&quot;includeLink\\&quot;:1,\\&quot;boxText\\&quot;:\\&quot;CureDRPLA Global Patient Registry\\&quot;,\\&quot;boxExcerptText\\&quot;:\\&quot;The goal of the CureDRPLA Global Patient Registry is to collect information on all DRPLA patients in one registry. By collecting the information on all DRPLA patients, the CureDRPLA Global Patient Registry will be a powerful resource for research and will enhance opportunities for treatment development.\\&quot;,\\&quot;boxUrl\\&quot;:\\&quot;https:\\\/\\\/curedrpla.org\\\/en\\\/global-patient-registry\\\/\\&quot;,\\&quot;boxImage\\&quot;:\\&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/wp-content\\\/uploads\\\/sites\\\/716\\\/2017\\\/06\\\/about-image.jpg\\&quot;}],\\&quot;boxCustomStyles\\&quot;:{\\&quot;includeUnderline\\&quot;:1,\\&quot;includeImage\\&quot;:1,\\&quot;includeLink\\&quot;:1,\\&quot;backgroundColor\\&quot;:\\&quot;darkBlue\\&quot;,\\&quot;imageSize\\&quot;:\\&quot;small\\&quot;,\\&quot;primaryHeading\\&quot;:\\&quot;Towards a Cure: Uniting for DRPLA Research\\&quot;,\\&quot;primaryText\\&quot;:\\&quot;Investing in research to cure DRPLA is vital to uncovering treatments that can slow or stop this devastating neurodegenerative disease, offering hope to affected individuals and families.\\&quot;},\\&quot;boxType\\&quot;:\\&quot;imageBoxes\\&quot;,\\&quot;boxStyleOption\\&quot;:\\&quot;ribbon-boxes\\&quot;}&quot;],&quot;apiCallInformation&quot;:[&quot;{}&quot;]}\"><\/som-cell>\n<h2 id=\"DRPLA-team\"><h2 class=\"section-som\"><span>Team<\/span><\/h2><\/h2>\n<som-cell cell-info=\"{&quot;ID&quot;:21667,&quot;post_author&quot;:&quot;68462&quot;,&quot;post_date&quot;:&quot;2025-08-15 11:29:16&quot;,&quot;post_date_gmt&quot;:&quot;2025-08-15 15:29:16&quot;,&quot;post_content&quot;:&quot;&quot;,&quot;post_title&quot;:&quot;DRPLA CoE Team&quot;,&quot;post_excerpt&quot;:&quot;&quot;,&quot;post_status&quot;:&quot;publish&quot;,&quot;comment_status&quot;:&quot;closed&quot;,&quot;ping_status&quot;:&quot;closed&quot;,&quot;post_password&quot;:&quot;&quot;,&quot;post_name&quot;:&quot;drpla-coe-team&quot;,&quot;to_ping&quot;:&quot;&quot;,&quot;pinged&quot;:&quot;&quot;,&quot;post_modified&quot;:&quot;2025-08-15 11:29:16&quot;,&quot;post_modified_gmt&quot;:&quot;2025-08-15 15:29:16&quot;,&quot;post_content_filtered&quot;:&quot;&quot;,&quot;post_parent&quot;:0,&quot;guid&quot;:&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/cell\\\/drpla-coe-team\\\/&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;_wpv_contains_gutenberg_views&quot;:[&quot;&quot;],&quot;_upd_sortorder&quot;:[&quot;1&quot;],&quot;layout&quot;:[&quot;Syndication&quot;],&quot;cellInformation&quot;:[&quot;{}&quot;],&quot;apiCallInformation&quot;:[&quot;{\\&quot;throttle\\&quot;:10,\\&quot;displayAmount\\&quot;:10,\\&quot;itemsPerPage\\&quot;:10,\\&quot;synMode\\&quot;:1,\\&quot;postType\\&quot;:\\&quot;people\\&quot;,\\&quot;listType\\&quot;:\\&quot;multi-column\\&quot;,\\&quot;sites\\&quot;:[{\\&quot;slug\\&quot;:\\&quot;self\\&quot;,\\&quot;categories\\&quot;:\\&quot;\\&quot;,\\&quot;useAndLogicWithin\\&quot;:\\&quot;false\\&quot;,\\&quot;useOrLogicBetween\\&quot;:\\&quot;false\\&quot;,\\&quot;tags\\&quot;:\\&quot;\\&quot;,\\&quot;apiUrl\\&quot;:\\&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/wp-json\\\/wp\\\/v2\\\/ud_entry\\&quot;,\\&quot;query\\&quot;:\\&quot;?ud_division[terms]=369&amp;per_page=100&amp;_fields=id,title,link,ud_division,ud_entry_custom_fields,featured_image,featured_image_thumbnail,featured_image_medium,featured_image_medium_large,featured_image_large\\&quot;,\\&quot;taxUrls\\&quot;:{\\&quot;divisions\\&quot;:\\&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/wp-json\\\/wp\\\/v2\\\/ud_division?per_page=100&amp;_fields=id,count,name,description,parent\\&quot;},\\&quot;ud_division\\&quot;:\\&quot;369\\&quot;}],\\&quot;searchEnabled\\&quot;:\\&quot;false\\&quot;,\\&quot;readMoreOption\\&quot;:0,\\&quot;includeImage\\&quot;:1,\\&quot;showPositions\\&quot;:1,\\&quot;showContactInfo\\&quot;:0,\\&quot;showGallarySummary\\&quot;:0,\\&quot;ignoreSortOrder\\&quot;:1,\\&quot;columnLayout\\&quot;:\\&quot;2\\&quot;}&quot;]}\"><\/som-cell>\n<h2 id=\"DRPLA-referral\"><h2 class=\"section-som\"><span>Referral<\/span><\/h2><\/h2>\n<p><strong>Providers &#8211; please specifically state the \u201cPed Neurology DRPLA Clinic \u2014 Dr. Shiloh-Malawsky\u201d in the patient referral.<\/strong><\/p>\n<ul>\n<li>Providers who have access to\u00a0<a class=\"external-link\" title=\"UNC CareLink\" href=\"https:\/\/unccarelink.org\/EpicCareLink\/common\/epic_login.asp\" target=\"_blank\" rel=\"noopener noreferrer\"><span class=\"external-link\">UNC CareLink<\/span><\/a>\u00a0can submit a referral online. If you would like to enroll, click on the link and select \u201cRequest an Account.\u201d You may wish to\u00a0<a class=\"external-link\" title=\"\" href=\"http:\/\/unclineberger.org\/referring\/CareLinkinfo.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">download an overview<\/a>\u00a0of the referral portal or view a\u00a0<a class=\"external-link\" title=\"\" href=\"http:\/\/unclineberger.org\/referring\/UNConlineenrollmentinstructions.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">step-by-step guide<\/a><span class=\"external-link\">\u00a0on how to sign up<\/span>.<\/li>\n<li>If you don\u2019t have a UNC CareLink account, please fax a\u00a0<a class=\"internal-link\" title=\"\" href=\"https:\/\/www.med.unc.edu\/neurology\/wp-content\/uploads\/sites\/716\/2023\/01\/Child-Neurology-Referral_revised-1.20.23.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">completed referral form<\/a><strong>,\u00a0<\/strong>including a specific referral question and records to (984) 974-5473<strong>.\u00a0<\/strong>Please call (984) 974-7337 if you have any questions.<\/li>\n<\/ul>\n<p>For more information on the referral process, please visit the Referring Provider Resources page &#8211; Child Neurology Referral Information.<\/p>\n<a class=\"btn btn-default btn-lg  oscitas-bootstrap-container\" target=\"_self\" href=\"https:\/\/www.med.unc.edu\/neurology\/patient-care\/referring-provider-resources\/#child-neurology-referral-information-1\">Referring Provider Resources for Child Neurology Referrals<\/a>\n<h2><h2 class=\"section-som\"><span>Clinic Location<\/span><\/h2><\/h2>\n<p><a href=\"https:\/\/www.unchealth.org\/care-services\/locations\/unc-hospitals-childrens-specialty-clinics-in-chapel-hill-at-carolina-pointe-ii\"><som-cell cell-info=\"{&quot;ID&quot;:19567,&quot;post_author&quot;:&quot;68462&quot;,&quot;post_date&quot;:&quot;2024-10-21 14:40:49&quot;,&quot;post_date_gmt&quot;:&quot;2024-10-21 18:40:49&quot;,&quot;post_content&quot;:&quot;&quot;,&quot;post_title&quot;:&quot;UNC Hospital Child Neurology Clinic at Carolina Point II&quot;,&quot;post_excerpt&quot;:&quot;&quot;,&quot;post_status&quot;:&quot;publish&quot;,&quot;comment_status&quot;:&quot;closed&quot;,&quot;ping_status&quot;:&quot;closed&quot;,&quot;post_password&quot;:&quot;&quot;,&quot;post_name&quot;:&quot;unc-hospital-child-neurology-clinic-at-carolina-point-ii-resident-facilities&quot;,&quot;to_ping&quot;:&quot;&quot;,&quot;pinged&quot;:&quot;&quot;,&quot;post_modified&quot;:&quot;2025-05-14 11:33:51&quot;,&quot;post_modified_gmt&quot;:&quot;2025-05-14 15:33:51&quot;,&quot;post_content_filtered&quot;:&quot;&quot;,&quot;post_parent&quot;:0,&quot;guid&quot;:&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/cell\\\/unc-hospital-child-neurology-clinic-at-carolina-point-ii-resident-facilities\\\/&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;_wpv_contains_gutenberg_views&quot;:[&quot;&quot;],&quot;_upd_sortorder&quot;:[&quot;1&quot;],&quot;layout&quot;:[&quot;SingleCellBlocks&quot;],&quot;cellInformation&quot;:[&quot;{\\&quot;singleCellBlocks\\&quot;:{\\&quot;imagePercent\\&quot;:50,\\&quot;imageMinHeight\\&quot;:350,\\&quot;mediaType\\&quot;:\\&quot;image\\&quot;,\\&quot;textAlignment\\&quot;:\\&quot;left\\&quot;,\\&quot;titleAccent\\&quot;:1,\\&quot;cellHeader\\&quot;:\\&quot;UNC Hospital Child Neurology Clinic at Carolina Point II\\&quot;,\\&quot;cellText\\&quot;:\\&quot;Home to UNC Child Neurology outpatient specialized care. \\&quot;,\\&quot;blockImage\\&quot;:\\&quot;https:\\\/\\\/www.med.unc.edu\\\/neurology\\\/wp-content\\\/uploads\\\/sites\\\/716\\\/2017\\\/06\\\/P1010007-scaled.jpg\\&quot;,\\&quot;backgroundImageAlignmentX\\&quot;:\\&quot;center\\&quot;,\\&quot;backgroundImageAlignmentY\\&quot;:\\&quot;top\\&quot;,\\&quot;stickerText\\&quot;:\\&quot;Fearington Clinic\\&quot;,\\&quot;backgroundColor\\&quot;:\\&quot;mediumBlue\\&quot;},\\&quot;repeatableBoxes\\&quot;:[],\\&quot;blockType\\&quot;:\\&quot;imageBlocks\\&quot;,\\&quot;blockStyle\\&quot;:\\&quot;halfImage\\&quot;}&quot;],&quot;apiCallInformation&quot;:[&quot;{}&quot;]}\"><\/som-cell><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>DRPLA is a complex and heterogeneous condition that can impact many aspects of everyday life, thus individuals affected and their families require access to specialized care to better understand this condition and find the best way to manage it while a treatment becomes available. CureDRPLA has launched this initiative to award an accreditation of \u201cDRPLA &hellip; <a href=\"https:\/\/www.med.unc.edu\/neurology\/divisions\/child-neurology-1\/patients\/drpla-center-of-excellence\/\" aria-label=\"Read more about DRPLA Center of Excellence\">Read more<\/a><\/p>\n","protected":false},"author":68462,"featured_media":0,"parent":21658,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-21664","page","type-page","status-publish","hentry","odd"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>DRPLA Center of Excellence | Department of Neurology<\/title>\n<meta name=\"description\" content=\"Discover expert care for DRPLA at UNC Neurology\u2019s Center of Excellence. 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