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Standards for Microbiome Measurements Workshop
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Meeting/ Workshop
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FDA
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OD/DPCPSI, NCI, NHGRI, NIAID, OD/DPCPSI/OSC
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This workshop was designed to seek input on defining reference materials, reference data, and reference methods for human microbiome community measurements.
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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 Web site 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 is comprised of NIH intramural scientists and program staff as well researchers from the Food and Drug Administration (FDA), and the National Institute of Standards and Technology. The committee organizes a seminar series; an annual NIH/FDA Glycosciences Research Day Meeting (averaging 250 people in attendance); a Mentoring & Networking Luncheon for graduate students and postdoctoral fellows to meet with staff from federal agencies and learn about NIH extramural programs; and it 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, NCATS, NEI, NHLBI, NIAID, NIBIB, NICHD, NIDA, NIDCD, NIDDK, NINDS, OD/DPCPSI/OSC
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The Stimulating Peripheral Activity to Relieve Conditions (SPARC) program''s central goal is to provide an integrated, predictive neural circuit map that illustrates the physiology and biological mechanisms underlying peripheral nervous system control of internal organ function. SPARC is collaborating with the FDA''s CDRH to facilitate discovery of new therapeutic uses for existing neuromodulation devices as well as improvements that make these devices more effective and/or minimally invasive. SPARC also coordinates with DARPA''s ElectRx program to minimize research overlap while ensuring complimentary efforts are undertaken to collectively advance the neuromodulation field as a whole.
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Strategic Multisite Initiative for the Identification, Linkage and Engagement in Care of Youth with Undiagnosed HIV Infection (SMILE in CARING for YOUTH)
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Research Initiative
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CDC
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NICHD, NIDA, NIMH
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The Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) was awarded grant money to expand their project of increasing availability of HIV testing for adolescents 12-24 and the provision of adolescent-focused healthcare services for those adolescents who are diagnosed with HIV infection. The project’s expansion includes all the ATN sites across the U.S. The Eunice Kennedy Shriver National Institute of Child Health and Human Development is collecting data to evaluate the effectiveness of adolescent oriented linkage to care services for the HIV infected adolescents. This collaboration has the potential to improve the health of American youth, both by identifying those with undiagnosed HIV and bringing them into adolescent-friendly treatment programs and by reducing the chances of them further spreading the virus to others. There is a committee "SMILE in CARING for YOUTH" that monitors activities related to the National Institutes of Health-Centers for Disease Control and Prevention collaboration on enhancing treatment and retention in care of HIV youth.
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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, NCI
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The Structured Data Capture (SDC) Initiative is sponsored by the Department of Health and Human Services, Office of the National Coordinator (ONC), as part of the Standards and Interoperability Framework, a program developed to foster collaboration between the public and private sectors to promote interoperable exchange of health data and information. The SDC mission is to develop and validate a data architecture and 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).
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Structured Data Capture Forms and Common Data Element Working Groups
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Committee, Work group, Advisory group, or Task Force
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AHRQ, CDC, FDA
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NCI, NLM
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This working group designed a Structured Data Capture (SDC) form and Data Element structure, as well as developed XML artifacts and an implementation guide. Provided expertise on ISO 11179 and 19763-13. We participated in a connectathon with CDC and FDA in 2015, and are monitoring activity ongoing. The 2016 connectathon is testing version 2 for the form design, we intend to realign our forms to enable transformation between NCI forms and SDC forms once the standard is stabilized.
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Study of Cancer Among United States Firefighters
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Research Initiative
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CDC
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NCI
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A retrospective cohort study to evaluate the relationship between occupational exposures of firefighters and cancer risk.
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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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Sub-SPIRIT Ebola Environment Sampling Concept of Operations
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Committee, Work group, Advisory group, or Task Force
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FDA, OS, SAMHSA
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NICHD
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The goal of this effort is to develop concepts of operations (CONOPS) for strategic research, including both controlled-environment and systematic field studies, to improve our understanding of the real-world environmental fate and transport of the Ebola virus to provide additional data to support public health efforts to protect at-risk workers and the public.
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