{"id":23107,"date":"2023-08-21T14:05:55","date_gmt":"2023-08-21T18:05:55","guid":{"rendered":"https:\/\/healthit-gov.go-vip.net\/buzz-blog\/?p=23107"},"modified":"2026-01-17T21:35:32","modified_gmt":"2026-01-17T21:35:32","slug":"advancing-genomic-data-sharing-for-research-and-patient-care-sync-for-genes-project-delivers-final-report-and-toolkit","status":"publish","type":"post","link":"https:\/\/healthit.gov\/blog\/research-and-scientific-advancement\/advancing-genomic-data-sharing-for-research-and-patient-care-sync-for-genes-project-delivers-final-report-and-toolkit\/","title":{"rendered":"Advancing Genomic Data-Sharing for Research and Patient Care: Sync for Genes Project Delivers Final Report and Toolkit"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">Genomic variations can affect a patient\u2019s risk for cancer, response to medications, and numerous other vital health outcomes. In fact, nine of the ten leading causes of death in the U.S. are influenced by genomic factors. The need for systems that help clinicians integrate genomics into care decisions has grown in importance.&nbsp;<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:240,&quot;335559740&quot;:288}\">&nbsp;<\/span><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">Recognizing this need, in 2017 ONC launched Sync for Genes, a project that sought to advance standards and tools to effectively integrate genomic information into clinical workflows. In May 2023, the project delivered its final report, including a robust toolkit that highlights resources to help advance genomic data-sharing for research and patient care.\u00a0<\/span><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">Here are some of the key takeaways from Sync for Genes project.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:240,&quot;335559740&quot;:288}\">&nbsp;<\/span><\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-a-systematic-phased-approach-t-o-address-interconnected-challenges-nbsp\"><span class=\"TextRun SCXW128262927 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW128262927 BCX0\" data-ccp-parastyle=\"heading 2\">A<\/span><span class=\"NormalTextRun SCXW128262927 BCX0\" data-ccp-parastyle=\"heading 2\"> Systematic, Phased Approach <\/span><span class=\"NormalTextRun SCXW128262927 BCX0\" data-ccp-parastyle=\"heading 2\">t<\/span><span class=\"NormalTextRun SCXW128262927 BCX0\" data-ccp-parastyle=\"heading 2\">o Address Interconnected Challenges<\/span><\/span><span class=\"EOP SCXW128262927 BCX0\" data-ccp-props=\"{&quot;134245418&quot;:true,&quot;134245529&quot;:true,&quot;201341983&quot;:0,&quot;335559737&quot;:1296,&quot;335559738&quot;:360,&quot;335559739&quot;:70,&quot;335559740&quot;:250}\">&nbsp;<\/span><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">Across five phases, Sync for Genes identified and addressed critical, intersecting challenges that impede the ability to share genomic data.&nbsp;<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:240,&quot;335559740&quot;:288}\">&nbsp;<\/span><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">The initial phase sought to enhance genomic data standards and incorporate them into the Fast Healthcare Interoperability Resources (FHIR\u00ae) standard. Subsequent phases built on this work by:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:240,&quot;335559740&quot;:288}\">&nbsp;<\/span><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><span data-contrast=\"auto\">Testing the standards with laboratories and providers<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Developing a proof-of-concept API to deliver genomic data to electronic health records (EHRs)<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Creating a prototype app and user interface for data exchange<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Demonstrating an ecosystem for sharing and interpreting genomic information at the point of care.&nbsp;<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-recommendations-f-or-implementing-genomic-data-standards-nbsp\"><span class=\"TextRun SCXW144242833 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW144242833 BCX0\" data-ccp-parastyle=\"heading 2\">Recommendations <\/span><span class=\"NormalTextRun SCXW144242833 BCX0\" data-ccp-parastyle=\"heading 2\">f<\/span><span class=\"NormalTextRun SCXW144242833 BCX0\" data-ccp-parastyle=\"heading 2\">or Implementing Genomic Data Standards<\/span><\/span><span class=\"EOP SCXW144242833 BCX0\" data-ccp-props=\"{&quot;134245418&quot;:true,&quot;134245529&quot;:true,&quot;201341983&quot;:0,&quot;335559737&quot;:1296,&quot;335559738&quot;:360,&quot;335559739&quot;:70,&quot;335559740&quot;:250}\">&nbsp;<\/span><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">To further support implementation and adoption, the <\/span><a href=\"https:\/\/healthit.gov\/wp-content\/uploads\/2023\/05\/SyncforGenesPhase5_Final-Report_508.pdf\" target=\"_blank\" rel=\"noreferrer noopener\"><span data-contrast=\"none\">Sync for Genes Phase 5 final report<\/span> [PDF &#8211; 401 KB]<\/a><span data-contrast=\"none\">\u00a0outlines four key recommendations:\u00a0<\/span><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><b><span data-contrast=\"auto\">Enhance and harmonize genomic data standards \u2013 <\/span><\/b><span data-contrast=\"auto\">Often buried in unstructured or semi-structured text, a patient\u2019s genetic results need to be recorded as discrete, sharable data.&nbsp;<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><b><span data-contrast=\"auto\">Develop a sandbox environment for testing \u2013 <\/span><\/b><span data-contrast=\"auto\">By giving the development community a place to discuss, test, and evaluate solutions, implementers can map genomics data and test code before pushing for implementation.&nbsp;<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><b><span data-contrast=\"auto\">Support implementation and adoption<\/span><\/b> <b><span data-contrast=\"auto\">of genomics <\/span><\/b><span data-contrast=\"auto\">\u2013 This<\/span> <span data-contrast=\"auto\">could include technical connect-a-thons for implementers, clinician workshops, and educational resources for patients.&nbsp;<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><b><span data-contrast=\"auto\">Enable clinical decision support<\/span><\/b><span data-contrast=\"auto\"> (<\/span><b><span data-contrast=\"auto\">CDS<\/span><\/b><span data-contrast=\"auto\">)<\/span><b><span data-contrast=\"auto\"> standards and capabilities \u2013<\/span><\/b><span data-contrast=\"auto\">Thoughtful CDS<\/span> <span data-contrast=\"auto\">demands a high degree of interoperability between genomic knowledge bases, EHRs, and other clinical systems. It also requires effective coordination with clinical oversight groups.<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-sync-f-or-genes-resources-toolkit-nbsp\"><span class=\"TextRun SCXW142969912 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW142969912 BCX0\" data-ccp-parastyle=\"heading 2\">Sync <\/span><span class=\"NormalTextRun SCXW142969912 BCX0\" data-ccp-parastyle=\"heading 2\">f<\/span><span class=\"NormalTextRun SCXW142969912 BCX0\" data-ccp-parastyle=\"heading 2\">or Genes Resources Toolkit<\/span><\/span><span class=\"EOP SCXW142969912 BCX0\" data-ccp-props=\"{&quot;134245418&quot;:true,&quot;134245529&quot;:true,&quot;201341983&quot;:0,&quot;335559737&quot;:1296,&quot;335559738&quot;:360,&quot;335559739&quot;:70,&quot;335559740&quot;:250}\">&nbsp;<\/span><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">To help organizations tackle these recommendations, the <a href=\"https:\/\/healthit.gov\/wp-content\/uploads\/2019\/04\/Sync_for_Genes_Toolkit_508.pdf\">Sync for Genes Resources Toolkit [PDF &#8211; 351 KB]<\/a> aggregates the insights and outputs developed across all project phases. The toolkit caters to the wide range of stakeholders who play a crucial role in the genomic data-sharing ecosystem, including: \u00a0<\/span><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><span data-contrast=\"auto\">Health IT and standards developers, exchanges, and registries<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Laboratories and testing companies<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Healthcare organizations<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Genomics and healthcare researchers<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Commercial and public payers<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Patient advocates<\/span><span data-ccp-props=\"{&quot;134245529&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">To facilitate continued collaboration across these organizations, ONC and other agencies \u2013 such as NIH, whose <\/span><i><span data-contrast=\"none\">All of Us<\/span><\/i><span data-contrast=\"none\"> Research Program is building an unprecedented database of genomic information \u2013 can play a coordinating role. By following the Sync for Genes model of collaboration and leveraging the project\u2019s robust resources, the clinical genomics community can help bring this information to the point of care.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:240,&quot;335559740&quot;:288}\">&nbsp;<\/span><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><span data-contrast=\"none\">To learn more about the Sync for Genes programs and access to published reports from all five phases, visit <\/span><a href=\"https:\/\/healthit.gov\/resources\"><span data-contrast=\"none\">Sync for Genes | HealthIT.gov<\/span><\/a><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:240,&quot;335559740&quot;:288}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Genomic variations can affect a patient\u2019s risk for cancer, response to medications, and numerous other [&hellip;]<\/p>\n","protected":false},"author":619,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_selected_menu":"","_show_breadcrumbs":"true","_blog_show_featured_image":false,"footnotes":""},"categories":[49],"archived-category":[],"featured":[],"topics":[439,423,424],"class_list":["post-23107","post","type-post","status-publish","format-standard","hentry","category-research-and-scientific-advancement","topics-historical-programs","topics-interoperability-investments","topics-scientific-initiatives"],"acf":{"blog_authors":[{"blog_author_profiles":"198684"}],"hp_news_hide":false},"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v28.5 (Yoast SEO v28.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Advancing Genomic Data-Sharing for Research and Patient Care: Sync for Genes Project Delivers Final Report and Toolkit - ONC Blog<\/title>\n<meta name=\"description\" content=\"Explore Sync for Genes&#039; toolkit to integrate genomic data into healthcare, enhancing standards and sharing. 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