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Structured Data Capture (SDC) Initiative
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Resource Development
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AHRQ, CDC, CMS, FDA, HRSA, IHS, IOS
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NLM, NCATS, NCI
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The Structured Data Capture (SDC) Initiative was initially sponsored by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology (ONC), as part of its Standards and Interoperability Framework, a program developed to foster collaboration between the public and private sectors to promote the interoperable exchange of health data and information. The SDC mission is to develop and validate a data architecture and set of exchange standards so that a structured set of data can be accessed from electronic health record systems, merged with comparable data and made accessible for purposes other than clinical care, such as research, patient safety, and public health. The SDC Working Group on Common Data Elements and Forms, chaired by NLM/NIH with NCI/NIH participation, evaluated and selected two ISO standards to serve as the basis for definitions of Common Data Elements and electronic Case Report Forms (eCRF) under the initiative: ISO/IEC 11179 (Metadata Registries and Data Elements metamodel) and ISO/IEC 19763-13 (Forms metamodel). Current work applies and extends these standards for use with the FHIR (Fast Healthcare Interoperability Resources) Specification, a developing HL7 standard for exchanging healthcare information electronically.
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Sudden Death in the Young (SDY) Registry
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Resource Development
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CDC, HRSA
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NHLBI, NINDS
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The Sudden Death in the Young (SDY) Registry is a surveillance system to track sudden deaths in youths less than or equal to 19 years of age in up to 10 states and to gather clinical data and a DNA sample to be used for research to explore the causes and risk factors for sudden death in the young. The SDY Registry is a collaboration between the National Heart, Lung, and Blood Institute (NHLBI), National Institute of Neurological Disorders and Stroke (NINDS), and Centers for Disease Control and Prevention (CDC).
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Support for Implementation of Agency Public Access Policies
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Resource Development
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AHRQ, CDC, FDA, IOS
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NLM, OD/OSP
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NIH Public Access Policy was created by NIH and established in statute by Congress in the Consolidated Appropriations Act 2008, P. L. 110-161, enacted on 12/26/2007. It ensures that the public can access without charge peer-reviewed journal articles arising from NIH-funded research. Since 2008, the PubMed Central (PMC) database has served as the repository for journal articles subject to the NIH Public Access Policy. The Office of Science and Technology Policy (OSTP) coordinated the development of public access policies across federal science agencies, and OSTP released a directive in February 2013 to increase public access to scientific publications and digital data. NIH is collaborating with five divisions and offices in HHS and four agencies outside HHS to use PMC and related services in support of their public access policies. Interagency agreements have been signed with AHRQ, ASPR, CDC, FDA and ACL within HHS, as well as with NASA, NIST, VA, EPA, and DHS. Researchers either employed and/or funded by all of these agencies have begun depositing manuscripts in PMC. IAAs with VA and AHRQ have also been extended to support inclusion of non-journal literature in NCBI's Bookshelf resource.
NIH has also entered memorandums of understanding with NOAA and DOD to share manuscripts deposited in PMC with other federal repositories, streamlining compliance with public access requirements for authors.
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Supporting Early Psychosis Research and Implementation
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Research Initiative
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OS
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NIMH
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The Assistant Secretary of Health and Human Services for Planning and Evaluation and the National Institute of Mental Health support research on the delivery of evidence-based early psychosis care, including facilitating the implementation of evidence-based coordinated specialty care (CSC) for early psychosis. The agencies meet on a regular basis to inform each other's research agenda on early psychosis care generally and CSC specifically, identify synergies in our research initiatives and formulate new research initiatives, and share related draft reports and funding opportunity announcements for comment.
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Supporting the Whole Student: Mental Health and Well-Being in STEMM Undergraduate and Graduate Education
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Committee, Work group, Advisory group, or Task Force
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SAMHSA
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NIMH, NIAAA, NIDA
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A Committee, convened by the National Academy of Sciences, conducted a study of the ways in which colleges and universities provide treatment and support for the mental health and well-being of undergraduate and graduate students, with a focus on students enrolled in science, technology, engineering, mathematics, and medicine (STEMM) courses. The Committee reviewed data and findings and conferred with experts in the mental health field, to gain an understanding of the resources, programs, policies, and practices geared to improving mental health in colleges and universities. The Committee published a report in January 2021, detailing their findings and recommendations for improving resources, programs, policies, and practices.
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Surveillance, Epidemiology and End Results (SEER) cancer registry and the Centers for Medicare & Medicaid Services' (CMS) Medicare Health Outcomes Survey (MHOS)
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Committee, Work group, Advisory group, or Task Force
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CMS
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NCI
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The SEER-MHOS is a data resource for cancer health outcomes research. It is based on a linkage between the NCI's Surveillance, Epidemiology and End Results (SEER)External Web Site Policy cancer registry data and the Centers for Medicare & Medicaid Services' (CMS) Health Outcomes Survey (HOS)
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Surveillance, Epidemiology, and End Results (SEER) Program
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Resource Development
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CDC
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NCI
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The Surveillance, Epidemiology, and End Results (SEER) program is the premier source for cancer statistics in the US. It collects information on incidence, prevalence, and survival from specific geographic areas representing 26 percent of the US population. Through SEER, the National Cancer Institute (NCI) develops reports on all of these information areas plus cancer mortality for the entire country. The site is intended for anyone interested in US cancer statistics or cancer surveillance methods.
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Synthetic DNA Working Group
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Committee, Work group, Advisory group, or Task Force
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CDC, OS
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OD/OSP
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Re-examining and updating (if necessary) the Screening Framework Guidance for Providers of Synthetic Double-Stranded DNA, which was released in 2010.
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System of Hospitals for Innovation in Pediatrics - Medical Devices (SHIP-MD)
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Meeting/ Workshop
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FDA
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NICHD
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All stakeholders interested in pediatric medical device development are invited to a dynamic 3-day virtual public meeting developed and guided by a multi-stakeholder group including C-Path, the U.S. Food and Drug Administration, AdvaMed, American Academy of Pediatrics, and leaders of pediatric health systems.
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Systematized Nomenclature of Medicine-Clinical Terms (SNOMED CT)
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Resource Development
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AHRQ, CDC, CMS, FDA, HRSA, IHS, IOS, SAMHSA
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NLM
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This activity provides support for SNOMED CT, a systematically organized computer processable collection of medical terminology covering most areas of clinical information such as diseases, findings, procedures, microorganisms, pharmaceuticals, etc. It allows a consistent way to index, store, retrieve, and aggregate clinical data across specialties and sites of care. It also helps to organize the content of medical records, reducing the variability in the way data is captured, encoded and used for clinical care of patients and research.
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