{"id":417,"date":"2024-02-22T12:57:23","date_gmt":"2024-02-22T17:57:23","guid":{"rendered":"https:\/\/sites.bu.edu\/rubenstein\/?page_id=417"},"modified":"2025-10-28T12:06:31","modified_gmt":"2025-10-28T16:06:31","slug":"dstothemax","status":"publish","type":"page","link":"https:\/\/sites.bu.edu\/rubenstein\/dstothemax\/","title":{"rendered":"DS-TO-THE-MAX"},"content":{"rendered":"<p><span style=\"color: #000000;\"><span class=\"NormalTextRun SCXW213016063 BCX0\">(<\/span><span class=\"NormalTextRun SCXW213016063 BCX0\"><em>Down Syndrome: Toward Optimal Trajectories and Health Equity using Medicaid Analytic <\/em><\/span><span class=\"NormalTextRun SpellingErrorV2Themed SpellingErrorHighlight SCXW213016063 BCX0\"><em>eXtract<\/em><\/span><span class=\"NormalTextRun SpellingErrorV2Themed SpellingErrorHighlight SCXW213016063 BCX0\">)<\/span><\/span><\/p>\n<p>&nbsp;<\/p>\n<figure id=\"attachment_449\" aria-describedby=\"caption-attachment-449\" style=\"width: 435px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" src=\"\/rubenstein\/files\/2024\/02\/DS-to-the-Max.jpeg\" alt=\"\" width=\"425\" height=\"322\" class=\"wp-image-449\" style=\"border-radius:10px\"\/><figcaption id=\"caption-attachment-449\" class=\"wp-caption-text\"><span style=\"color: #808080;\">DS-TO-THE-MAX Research Study Logo by artist Kathleen Coogan <a href=\"http:\/\/kathleendesigns.org\" style=\"color: #808080;\">kathleendesigns.org <\/a><\/span><\/figcaption><\/figure>\n<p>&nbsp;<\/p>\n<h3><\/h3>\n<h4 style=\"text-align: center;\"><span style=\"color: #000000;\"><strong>We want to improve health across the life course for individuals with Down syndrome.<\/strong><\/span><\/h4>\n<p style=\"text-align: left;\"><span style=\"color: #000000;\">Nearly all adults with Down syndrome use Medicaid. Medicaid is a type of public health insurance for individuals with disabilities or low income in the United States. Our research uses Medicaid data to understand the causes of obstructive sleep apnea, dementia, and mortality among individuals with Down syndrome.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>DS-TO-THE-MAX will:<\/strong><\/span><\/p>\n<ul>\n<li><span style=\"color: #000000;\">Help doctors, nurses, and other health providers create guidelines for treatment.<\/span><\/li>\n<li><span style=\"color: #000000;\">Support researchers in designing interventions.<\/span><\/li>\n<li><span style=\"color: #000000;\">Assist advocates in shaping public health messaging and policy change.<\/span><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>About the dataset:<\/strong><\/span><\/p>\n<p style=\"font-weight: 400;\"><span style=\"color: #000000;\">We have built a large data set of 135,000 adults with Down syndrome in Medicaid and Medicare from 2011 to 2019, with plans to add data from 2020 to 2022. <span style=\"text-decoration: underline;\"><strong>This dataset represents nearly<\/strong> <\/span><strong><span style=\"text-decoration: underline;\">all adults with Down syndrome<\/span>\u00a0and is 100 times larger than other Down syndrome datasets<\/strong>. <\/span><span style=\"color: #000000;\"><\/span><span style=\"color: #000000;\"><\/span><\/p>\n<p><a href=\"\/rubenstein\/files\/2025\/06\/DSTOTHEMAX-Data-One-Pager-external-2023.png\"><img loading=\"lazy\" src=\"\/rubenstein\/files\/2025\/06\/DSTOTHEMAX-Data-One-Pager-external-2023-491x636.png\" alt=\"A one-pager describing the work done in DS-TO-THE-MAX\" width=\"491\" height=\"636\" class=\"wp-image-905 size-medium aligncenter\" style=\"border-radius:10px\" srcset=\"https:\/\/sites.bu.edu\/rubenstein\/files\/2025\/06\/DSTOTHEMAX-Data-One-Pager-external-2023-491x636.png 491w, https:\/\/sites.bu.edu\/rubenstein\/files\/2025\/06\/DSTOTHEMAX-Data-One-Pager-external-2023-791x1024.png 791w, https:\/\/sites.bu.edu\/rubenstein\/files\/2025\/06\/DSTOTHEMAX-Data-One-Pager-external-2023-768x994.png 768w, https:\/\/sites.bu.edu\/rubenstein\/files\/2025\/06\/DSTOTHEMAX-Data-One-Pager-external-2023-1187x1536.png 1187w, https:\/\/sites.bu.edu\/rubenstein\/files\/2025\/06\/DSTOTHEMAX-Data-One-Pager-external-2023-1583x2048.png 1583w\" sizes=\"(max-width: 491px) 100vw, 491px\" \/><\/a><\/p>\n<p style=\"text-align: center;\"><em>DS-TO-THE-MAX Data One Pager\u00a0<\/em><\/p>\n<p><span style=\"color: #000000;\"><strong>Some of what we&#8217;ve found:<\/strong><\/span><\/p>\n<ul>\n<li><span style=\"color: #000000;\">Adults with Down syndrome rely heavily on Medicaid and Medicare, using these services more frequently and at a higher cost than their peers with other intellectual disabilities.<\/span><\/li>\n<li><span style=\"color: #000000;\">About 40% of adults with Down syndrome are enrolled in both Medicare and Medicaid, with enrollment patterns varying by race and region.<\/span><\/li>\n<li><span style=\"color: #000000;\">While age-adjusted mortality rates are similar between Black and white individuals with Down syndrome, rates are lower for Pacific Islander, Asian, Native, and mixed-race groups (Tewolde et al., in press).<\/span><\/li>\n<li><span style=\"color: #000000;\">Hospitalization rates are higher among all marginalized racial and ethnic groups compared to white individuals (Tewolde et al., in press).<\/span><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><em><strong><span style=\"color: #000000;\">Learn about our <a href=\"https:\/\/sites.bu.edu\/rubenstein\/dstothemax\/co-research-team\/\"><span>Co-Research Team<\/span><\/a>!<\/span><\/strong><\/em><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>Additional info:<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><em>Funding: <span data-contrast=\"auto\" xml:lang=\"EN-US\" lang=\"EN-US\" class=\"TextRun SCXW121135934 BCX0\"><span class=\"NormalTextRun SCXW121135934 BCX0\">1R01AG073179-01<\/span><\/span><\/em><\/span><\/p>\n<p><span style=\"color: #000000;\"><em><span class=\"NormalTextRun SCXW166819469 BCX0\">PI: Eric Rubenstein, PhD <\/span><span class=\"NormalTextRun SpellingErrorV2Themed SCXW166819469 BCX0\">ScM<\/span><\/em><\/span><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<ol><\/ol>\n","protected":false},"excerpt":{"rendered":"<p>(Down Syndrome: Toward Optimal Trajectories and Health Equity using Medicaid Analytic eXtract) &nbsp; &nbsp; We want to improve health across the life course for individuals with Down syndrome. Nearly all adults with Down syndrome use Medicaid. Medicaid is a type of public health insurance for individuals with disabilities or low income in the United States. [&hellip;]<\/p>\n","protected":false},"author":23185,"featured_media":0,"parent":0,"menu_order":4,"comment_status":"closed","ping_status":"closed","template":"page-templates\/no-sidebars.php","meta":[],"_links":{"self":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages\/417"}],"collection":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/users\/23185"}],"replies":[{"embeddable":true,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/comments?post=417"}],"version-history":[{"count":34,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages\/417\/revisions"}],"predecessor-version":[{"id":1446,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages\/417\/revisions\/1446"}],"wp:attachment":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/media?parent=417"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}