{"id":4607,"date":"2022-06-10T13:58:51","date_gmt":"2022-06-10T13:58:51","guid":{"rendered":"https:\/\/ubc.com\/?p=3466"},"modified":"2025-05-15T18:45:34","modified_gmt":"2025-05-15T18:45:34","slug":"integrated-registries-rare-disease","status":"publish","type":"insights","link":"https:\/\/ubc.com\/insights\/integrated-registries-rare-disease\/","title":{"rendered":"Why Integrated Registries are Critical for Rare Disease"},"content":{"rendered":"<p>UBC recently published an article in <a href=\"http:\/\/www.samedanltd.com\/magazine\/13\" target=\"_blank\" rel=\"noopener\">International Clinical Trials Magazine<\/a> on how integrated registries can enhance our understanding and ability to treat rare diseases effectively. UBC&#8217;s contributing experts included Annette Stemhagen, Senior Vice President and Chief Scientific Officer; Aaron Berger, Vice President of Real World Evidence; and Irene Cosmatos, Senior Real World Data Epidemiologist.<\/p>\n<p>This article discusses:<\/p>\n<ul>\n<li><strong>Why integrating registries is necessary in the rare disease space<\/strong><\/li>\n<li><strong>The key data skills involved in building an integrated registry<\/strong><\/li>\n<li><strong>The technical requirements for building an integrated registry<\/strong><\/li>\n<li><strong>And more<\/strong><\/li>\n<\/ul>\n<p>To read the full article, <a href=\"https:\/\/ubc.com\/wp-content\/uploads\/2024\/02\/Integrated-Registries-ICT-Article-May-Edition.pdf\" target=\"_blank\" rel=\"noopener\">click here<\/a>.<\/p>\n<p>To learn more about UBC\u2019s observational research experience and capabilities, visit <a href=\"\/solution\/evidence-development\/late-stage-research\/\">here<\/a>\u00a0or\u00a0<a href=\"https:\/\/ubc.com\/contact\/\">get in touch<\/a>\u00a0with us.<\/p>\n<p style=\"text-align: left;\"><em>International Clinical Trials, May 2022, pages 58-60. \u00a9 Samedan Ltd<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Learn more in this article from UBC&#8217;s Evidence Development team in International Clinical Trials Magazine.<\/p>\n","protected":false},"featured_media":10577,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"open","template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"insights_category":[35],"insights_tags":[],"class_list":["post-4607","insights","type-insights","status-publish","format-standard","has-post-thumbnail","hentry","insights_category-articles"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v21.7 (Yoast SEO v26.1.1) - 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