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Standards for Genetic Testing Report
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Research Initiative
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AHRQ, CDC, OS
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NLM, NHGRI
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This activity aims to develop a standard reporting format for genetic variations using Logical Observation Identifiers Names and Codes (LOINC) and HL7, for electronic medical records health information exchange, and activities of the Office of the Secretary.
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State Cancer Profiles
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Resource Development
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CDC
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NCI
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The objective of the State Cancer Profiles Website is to provide a system to characterize the cancer burden in a standardized manner in order to motivate action, integrate surveillance into cancer control planning, characterize areas and demographic groups, and expose health disparities. The focus is on cancer sites for which there are evidence-based control interventions. Interactive graphics and maps provide visual support for deciding where to focus cancer control efforts.
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Steering Committee of the Scientific Interest Group in Glycobiology
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Committee, Work group, Advisory group, or Task Force
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FDA
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NIGMS, NCI, NHGRI, NHLBI, NIAID, NICHD, NIDCR, NIDDK
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The Steering Committee of the Scientific Interest Group in Glycobiology (GlycoSIG) is comprised of National Institutes of Health (NIH) intramural scientists and program staff as well researchers from the Food and Drug Administration (FDA) and the National Institute of Standards and Technology (NIST). The committee organizes a seminar series; an annual NIH/FDA Glycosciences Research Day Meeting (averaging 250 people in attendance); and a Mentoring & Networking Luncheon for graduate students and postdoctoral fellows to meet with staff from federal agencies and learn about NIH extramural programs. The Committee also offers a Special Topics in the Glycosciences Course every other year. In addition, the GlycoSIG maintains an email listserve to distribute information on meetings, jobs, funding opportunities, and seminars. The SIG cross posts with other NIH SIG’s that share interests.
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Stimulating Peripheral Activity to Relieve Conditions
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Research Initiative
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FDA
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OD/DPCPSI/OSC, NCATS, NCCIH, NCI, NEI, NHLBI, NIAID, NIBIB, NICHD, NIDA, NIDCD, NIDDK, NIMH, NINDS
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The Stimulating Peripheral Activity to Relieve Conditions (SPARC) program seeks to accelerate development of therapeutic devices that modulate electrical activity in nerves to improve organ function. SPARC has a memorandum of understanding with Food and Drug Administration (FDA) that facilitates coordination and collaboration around common interests and goals in developing neurostimulatory devices for interrogating and elucidating peripheral autonomic and sensory control of organ function to catalyze development of more effective and minimally invasive neuromodulation therapies. SPARC is also collaborating with the FDA through an interagency agreement to support development of technologies in the CDRH/OSEL laboratories for imaging of peripheral nerves to increase understanding of nerve structure, function and neuromodulation safety.
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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, OS
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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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Study to Assess the Incidence of Type 1 Diabetes in Young Adults
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Research Initiative
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CDC
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NIDDK
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The goal of this study is to develop, implement, and evaluate a population-based, timely, low-cost surveillance system for the assessment of the incidence of type 1 diabetes among young adults in the United States. The study will determine the incidence of type 1 diabetes among young adults and will include an Islet Autoantibody Standardization Program (ISAP)-certified central laboratory for the measurement of diabetes auto anti-bodies in all individuals identified with newly diagnosed diabetes. Incident cases of diabetes will be identified using electronic health records.
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Subcommittee on Open Science
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Committee, Work group, Advisory group, or Task Force
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ACL, AHRQ, CDC, FDA, OS
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OD/OSP, NLM, OD/OER
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Advance Federal efforts to support open science by increasing access to and use of the results of Federally funded research and development.
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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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Suicide Mortality Surveillance
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Other
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CDC
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NIMH
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Through the Suicide Mortality Surveillance project, the Centers for Disease Control and Prevention (CDC) will develop and refine a rapid suicide mortality surveillance system. Monitoring the trends in cause-specific mortality is critical for identifying emerging public health problems and in generating evidence for health policy development, implementation, and evaluation. Timely information is important for monitoring severity of the disease or condition, allocating resources, and facilitating preventive and control programs. The results from this study will yield valuable information about the validity, feasibility, and timeliness of the enhanced vital statistics system for rapid suicide surveillance.
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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, OS
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NLM
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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.
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