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Structured Data Capture Initiative, under the Standards and Interoperability (S&I) Framework
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Resource Development
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AHRQ, CDC, FDA, OS
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NLM
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NLM is collaborating with the Office of the National Coordinator for Health Information Technology (ONC) and AHRQ under the auspices of ONC''s S&I Framework. This initiative will develop and validate a standards-based data architecture so that a structured set of data can be accessed from EHRs and be stored for merger with comparable data for other purposes, including: electronic Case Report Form (eCRF) used for clinical research including Patient Centered Outcomes Research (PCOR); patient safety and adverse event reporting leveraging forms from AHRQ and FDA; and public health reporting of infectious diseases.
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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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Subpopulations and Intermediate Outcome Measures in Chronic Obstructive Pulmonary Disease (COPD)
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Research Initiative
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FDA
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NHLBI
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SPIROMICS (SubPopulations and Intermediate Outcome Measures In Chronic Obstructive Pulmonary Disease Study) is an observational study of COPD (Chronic Obstructive Pulmonary Disease) that seeks to identify practical intermediate outcome measures and mechanistically homogeneous subgroups of patients with the disease. The study was developed in cooperation with the U.S. Food and Drug Administration and will be implemented with industrial partners.
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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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NINDS, NHLBI
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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 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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Sudden Unexpected/Unexplained Infant Death (SUID)/Sudden Infant Death Syndrome (SIDS) workgroup
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Meeting/ Workshop
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ACF, CDC, FDA, HRSA, IHS
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NICHD
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NICHD co-chairs with HRSA, a Federal Sudden Unexpected/Unexplained Infant Death (SUID) /Sudden Infant Death Syndrome (SIDS) Workgroup. The partner agencies include the Administration for Children and Families (ACF); Division of Reproductive Health, National Center for Chronic Disease Prevention and Health Promotion, and Division of Unintentional Injury Prevention, National Center for Injury Prevention and Control, Centers for Disease Control and Prevention (CDC); Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH); Food and Drug Administration (FDA); Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA); the Indian Health Service (IHS); Division of Information and Education, HHS Office of Minority Health (OMH); Consumer Product Safety Commission (CPSC); and Office of the Deputy Assistant Secretary of Defense, Military and Community Family Policy, Family Advocacy Program, Department of Defense (DoD). The common commitment of the ACF, CDC, NIH, FDA, HRSA, IHS, HHS/OMH, CPSC, and DoD is to address the public health challenges of SIDS and SUID and opportunities for prevention in the United States. The purpose of the partnership is to establish and enhance relationships among Federal agencies with responsibilities for SIDS and SUID. The partner agencies intend to work together to improve communication and coordination, and to collaborate on a range of activities designed to reduce, and, ultimately, eliminate SIDS and SUID, including the elimination of racial, ethnic and socio-economic disparities.
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Suicide Research Consortium
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Committee, Work group, Advisory group, or Task Force
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CDC, IHS, SAMHSA
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NIAAA, NIMH
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The consortium coordinates program development in suicide research, stimulates extramural research on suicide, and disseminates science-based information on suicidology.
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Support for the Federal Interagency Forum on Child and Family Statistics
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Committee, Work group, Advisory group, or Task Force
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ACF, AHRQ, CDC, HRSA, SAMHSA
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NIMH, NICHD, NIDA
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The Federal Interagency Forum on Child and Family Statistics, or the Forum, is a working group of Federal agencies that collect, analyze, and report data on issues related to children and families. The mission of the Forum is to foster coordination and collaboration and to enhance and improve consistency in the collection and reporting of Federal data on children and families. The Forum also aims to improve the reporting and dissemination of information on the status of children and families. Dr. Regina Bures is serving on the Planning, Reporting, and Research and Innovation Committees within this committee. The Forum''s signature report, America''s Children: Key National Indicators of Well-Being, provides annual updates on the well-being of children and families in the United States across a range of domains.
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Surveillance, Epidemiology and End Results (SEER) - Medicare Database
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Resource Development
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CMS
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NCI
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The Surveillance, Epidemiology, and End Results (SEER)-Medicare data are a unique resource that can be used for research related to the health care provided to persons with cancer. The database results from the linkage of two large population-based data sources: the SEER cancer registries data and the Medicare enrollment and claims files.
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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 U.S. It collects information on incidence, prevalence and survival from specific geographic areas representing 26 percent of the US population. Through SEER, we develop reports on all of these information areas plus cancer mortality for the entire country. The site is intended for anyone interested in U.S, cancer statistics or cancer surveillance methods.
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Targeting of Interleukin-13 Receptor a2 for Treatment of Head and Neck Squamous Cell Carcinoma Induced by Conditional Deletion of TGF-ß and PTEN Signaling
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Research Initiative
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FDA
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NIDCR, NIDCD
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The activity will test new animal models of head and neck squamous cell cancer with targeted treatments using Interleukin-13 Receptor alpha 2 antagonists.
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