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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, and EPA. Researchers funded by CDC, VA, NIST, AHRQ, FDA, and NASA have begun depositing manuscripts in PMC.
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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 Database 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 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 US. It collects information on incidence, prevalence, and survival from specific geographic areas representing 26 percent of the US population. Through SEER, 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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Sync for Science (S4S)
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Committee, Work group, Advisory group, or Task Force
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OS
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OD/AoU
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Sync for Science (S4S) is a collaboration with Harvard Medical School, various electronic health record (EHR) vendors, and the United States Federal Government (National Institutes of Health and the Office of the National Coordinator for Health Information Technology (ONC)). Sync for Science (S4S) is a technology for enabling individuals to donate electronic clinical and health data to biomedical research studies. S4S is working towards a provider pilot in conjunction with the All of Us Research Program (formerly known as the Precision Medicine Initiative Cohort Program), a national, large-scale research enterprise designed to support discoveries that increase our ability to better treat and prevent disease by enrolling one million or more volunteers. The health data to be gathered by All of Us will support research across a breadth of disciplines. The Harvard team is funded through a grant supplement supported by NIH. ONC has provided various levels of guidance including the development of privacy and security considerations for the S4S technology implementation, an effort contracted to ESAC Inc.
S4S provides participants the ability to share electronic health record-based clinical-health data with a research program of their choice via an open, read-only application programming interface (API). The S4S API is based on the Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR) and OAuth 2.0 standards. The S4S API requires implementers to use technology that describes how app developers can access FHIR resources using OAuth 2.0. OAuth 2.0 is used to provide access control based on rules set to enforce a vendor site’s security policy. The S4S API was developed to use OAuth 2.0 to allow an application to have read-only access to all or a portion of electronic personal health information about a patient made available through an HPOs patient portal, via the patient’s authentication credentials. The S4S API enables a health provider organization (HPO) to share a subset of the Certified EHR Technology (CEHRT) Common Clinical Data Set (CCDS) data elements, consistent with the Argonaut Project FHIR profile. The S4S API was developed with the intention that it can be used in the future for other research applications. Future applications may use additional or different subsets of the CCDS data elements, as their applications require.
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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, OS, 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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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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This activity is testing new animal models of head and neck squamous cell cancer with targeted treatments using Interleukin-13 Receptor alpha 2 antagonists.
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Task Force for Combating Antibiotic-Resistant Bacteria (CARB)
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Committee, Work group, Advisory group, or Task Force
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AHRQ, BARDA, CDC, CMS, FDA, HRSA
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NIAID
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Established by Executive Order 13676, the Task Force facilitates implementation of the CARB Action Plan and provides progress reports and quarterly updates describing key achievements. The Task Force is an internal government committee comprised of federal representatives and co-chaired by the Secretaries of Defense, Agriculture, and HHS.
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Task Force on Research Specific to Pregnant Women and Lactating Women (PRGLAC)
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Committee, Work group, Advisory group, or Task Force
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AHRQ, CDC, FDA, HRSA, OS
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NICHD, NCATS, NHLBI, NIAID, NIDDK, NIMH, OD/DPCPSI/ORWH
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The 21st Century Cures Act established PRGLAC to advise the Secretary of Health and Human Services (HHS) regarding gaps in knowledge and research on safe and effective therapies for pregnant women and lactating women. PRGLAC is tasked with identifying these gaps and will report its findings back to the Secretary. In addition to providing advice and guidance to the Secretary, the Task Force will prepare and submit to the Secretary and Congress a report that includes each of the following:
a plan to identify and address gaps in knowledge and research regarding safe and effective therapies for pregnant women and lactating women, including the development of such therapies; ethical issues surrounding the inclusion of pregnant women and lactating women in clinical research; effective communication strategies with healthcare providers and the public on information relevant to pregnant women and lactating women; and recommendations to improve the development of safe and effective therapies for pregnant women and lactating women. The report will also include identification of Federal activities, including the state of research on pregnancy and lactation; recommendations for the coordination of, and collaboration on research related to pregnant women and lactating women; dissemination of research findings and information relevant to pregnant women and lactating women to providers and the public; and existing Federal efforts and programs to improve the scientific understanding of the health impacts on pregnant women, lactating women, and related birth and pediatric outcomes, including with respect to pharmacokinetics, pharmacodynamics, and toxicities.
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Technical and Clinical Consultation to Indian Health Service in Kidney Disease
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Other
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IHS
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NIDDK
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A National Institute of Diabetes and Digestive and Kidney Diseases senior staff member serves as Chief Clinical Consultant for Nephrology for the Indian Health Service.
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Technical Consultation on Viral Hepatitis (HCV) Infection in Young Injection Drug Users
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Meeting/ Workshop
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CDC, OS, SAMHSA
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NIDA, NIAID, NIDDK
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This collaboration brings Federal and non-Federal clinician/researchers from academia, state public health departments, and communities together to present and discuss current research and other information on an emerging epidemic of viral hepatitis (HCV) infection in the 15-30 year group of Injection Drug Users (IDUs).
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