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CMS-NIH Data Access Committee
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Committee, Work group, Advisory group, or Task Force
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CMS
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OD/OSP, CC, CSR, NCATS, NCCAM, NCI, NEI, NHGRI, NHLBI, NIA, NIAAA, NIAID, NIAMS, NIBIB, NICHD, NIDA, NIDCD, NIDCR, NIDDK, NIMH, NIMHD, NINDS, NINR, NLM, OD/DPCPSI/OBSSR, OD/DPCPSI/ODP
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Observational studies based, in part, on available CMS data could generate important knowledge and policy relevant findings. NIH and CMS established a Data Access Committee to identify and pursue short and long term research priorities. Current initiatives include: implementation of an Inter-Agency Agreement wherein NIH directly purchases blanket access to CMS data from CMS, instead of paying grantees to access these data individually (which incurs high indirect cost rates for NIH); and convening quarterly meetings of the CMS-NIH Data Access Committee to discuss data policy and access issues. Future meetings may include presentations by NIH-funded investigators and in-house CMS data analyses.
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CMS-NIH Senior Leadership Forum
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Committee, Work group, Advisory group, or Task Force
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CMS
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OD/OSP, NCI, NHLBI, NIA, NIDDK, NINDS
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A “CMS-NIH Senior Leadership Forum” comprised of NIH Director Francis Collins, CMS Acting Administrator Marilyn Tavenner, and Senior Staff from both agencies, convenes quarterly. Topics include:
• NIH-supported research findings of interest to CMS in high impact conditions such as diabetes, schizophrenia, post-acute stroke care, prevention of pre-term birth, lung cancer CT screening, tobacco cessation, genomics, etc.
• Enhancing investigator access to CMS data through the use of Data Enclaves.
• Development of common data elements (CDEs) to enhance the conduct of clinical research.
• Collaborative development of an RFA with the CMS Innovation Center, “Low Cost, Pragmatic Patient-Centered Randomized Controlled Intervention Trials,” issued and funded by NIH.
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Collaboration with the Council on Emergency Medical Care
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Other
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OS
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NICHD, NCATS, NHLBI, NINDS
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The Council on Emergency Medical Care (CEMC) is a coalition comprised of subject-matter experts and policy makers with representation from organizations across the US Government (USG). The CEMC serves to provide policy level guidance and facilitate inter-agency coordination. This entity contributes to the development and advancement of Federal priorities relating to emergency medical care and informs the development of joint strategies and cohesive policies across the USG to collaborate and coordinate ongoing efforts to improve the nation''s emergency care system.
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Collaborative Islet Transplant Registry Ad Hoc Scientific Advisory Committee
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Committee, Work group, Advisory group, or Task Force
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FDA, HRSA
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NIAID
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This committee provides scientific direction to the Registry on an ad hoc basis.
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Collaborative Pediatric Critical Care Research Network (CPCCRN)
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Research Initiative
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HRSA
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NICHD
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The goal of the Collaborative Pediatric Critical Care Research Network (CPCCRN) is to develop an infrastructure to have well-designed collaborative clinical trials and meaningful descriptive studies in pediatric critical care medicine. The Network seeks to reduce morbidity and mortality in pediatric critical illness and injury, and to provide a framework for the development of the scientific basis of pediatric critical care practice.
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Collection and Characterization of HIV Variant Strains in Cameroon for an HIV Panels Project
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Research Initiative
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FDA
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NIAID
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This initiative will update the global viral panels to analyze multiple, diverse isolates from different parts of the world. This activity is part of NIAID’s ongoing efforts to develop a well characterized repository for diagnostics, drug, and vaccine studies.
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Committee on Fetus and Newborn
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Committee, Work group, Advisory group, or Task Force
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CDC
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NICHD
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The Committee on the Fetus and Newborn (COFN) studies issues and current advances in fetal and neonatal care; makes recommendations regarding neonatal practice; collaborates with the American College of Obstetricians and Gynecologists (ACOG) to consider perinatal issues on which the practices of obstetrics and pediatrics merge; and works cooperatively with ACOG on new editions of Guidelines for Perinatal Care. In 1937, the Academy established the Committee on Neonatal Morbidity and Mortality to collaborate with a similar Committee in the American Pediatric Society. Together, these committees agreed that neonatal mortality and morbidity could be reduced by applying what was already known. The group made a number of recommendations including: collect statistics and develop a standard nomenclature for causes of death, conduct more autopsies to learn about the causes of death, collaborate with obstetricians, and develop standards for protection of newborn infants. In 1938, the committee requested a name change to the Committee on Problems of the Fetus and Newborn Infant and in 1941, the name was changed to its current name, COFN.
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Committee to Review NIOSH Decisions on Special Exposure Cohorts
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Committee, Work group, Advisory group, or Task Force
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OS
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NCI
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NCI was a panel member for administrative review of NIOSH decisions to create special exposure cohorts in response to claimants.
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Common Data Elements (CDE) for Patient-Centered Outcomes Research
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Resource Development
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OS
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NLM, CC, CIT, NCATS, NCI, NEI, NHGRI, NHLBI, NIA, NIAID, NIAMS, NICHD, NIDA, NIDDK, NIEHS, NIMH, NINDS, NINR, OD/OER
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Led by NLM, a work-group of the Trans-NIH BioMedical Informatics Coordinating Committee (BMIC) and others are working to promote the use of common data elements in research, surveillance, and patient registries to facilitate data sharing and reuse. Work has produced a portal of NIH projects that use Common Data Elements (CDEs) and, with the assistance of funding to develop data infrastructure to promote patient-centered outcomes research (OS Patient-Centered Outcomes Research Trust Fund), will contribute to development of a search, retrieval, and repository mechanism that will support and reflect the standards work of the Standards & Interoperability (S&I) Framework Structured Data Capture Initiative. This project contributes to efforts to develop a repository and search tool for identification of CDEs for Patient-Centered Outcomes Research.
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Community Health Worker Initiative
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Public Education Campaign
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HRSA, IHS
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NHLBI
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The Community Health Worker (CHW) Initiative supports activities to reduce disparities in cardiovascular risk factors and asthma in African American, Latino, American Indian, and Filipino population groups. The project uses formative research (literature reviews, focus groups, and workshops) to inform the development and implementation of approaches that integrate CHW activities into the broader health workforce to improve cardiovascular health and reduce asthma disparities.
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