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Mortality Disparities in American Communities (MDAC) Study
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Research Initiative
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CDC, FDA
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NHLBI, NCI, NIA
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The Mortality Disparities in American Communities study leverages the very large, nationally representative, American Community Survey to examine mortality disparities according to a range of social and demographic factors including: age, race, ethnicity, geography, neighborhood characteristics, education, income, and household factors. The study can further examine disparities in Medicare and Medicaid utilization.
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Multiagency Data Initiatives to Build Data Capacity for Patient-Centered Outcomes Research for COVID-19
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Resource Development
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AHRQ, ASPE
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NIDDK, NCATS
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NIH is working with the HHS Office of the Assistant Secretary for Preparedness and Evaluation on several initiatives related to building data capacity for patient-centered outcomes research for COVID-19. The “Understanding COVID-19 Trajectory and Outcomes in the Context of MCC Through e-Care Plan Development” project (a collaboration between AHRQ, NIDDK, and ASPE) works to expand standards-based e-Care plan tools to facilitate aggregation and sharing of person-centered-planning data, including health concerns, social determinants of health, complex constellations of COVID 19 sequelae, and behavioral health concerns, across disparate systems for people living with multiple chronic conditions, their caregivers, and their care teams. The “National COVID-19 Longitudinal Research Database Linked to CMS Data” project (a collaboration between ASPE, NIDDK, and NCATS) works to evaluate disparities by looking at community characteristics using geocoding approaches and information on air quality and housing. It also seeks to capture care and outcomes of vulnerable populations such as patients on dialysis, nursing home residents, and low-income individuals.
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Multiple Chronic Conditions eCare Plan Project
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Resource Development
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AHRQ, ASPE
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NIDDK
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The goal of this initiative is to build data capacity for conducting pragmatic, patient-centered outcomes research (PCOR) by developing an interoperable electronic care (eCare) plan to facilitate aggregation and sharing of critical patient-centered data across home, community, clinic and research-based settings by extracting data from point-of-care health systems and allowing transfer of that data cross settings. This is a joint initiative between the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the Agency for Healthcare Research and Quality (AHRQ), and the Assistant Secretary for Planning and Evaluation (ASPE).
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Muscular Dystrophy Coordinating Committee (MDCC)
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Committee, Work group, Advisory group, or Task Force
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ACL, CDC, FDA, HRSA
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NINDS, NHLBI, NIAMS, NICHD
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This Federal Advisory Committee coordinates activities relevant to the various forms of muscular dystrophy across the National Institutes of Health (NIH) and other federal agencies. The committee also includes members from patient organizations. Strategic planning efforts by the coordinating committee led to the development of an Action Plan for the Muscular Dystrophies, which contains specific research objectives appropriate to the missions of all committee member agencies and organizations, and thus serves as a central focus for research coordination. The plan is available at the MDCC web site.
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My Family Health Portrait (MFHP)
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Resource Development
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CDC
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NHGRI, NCI
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My Family Health Portrait (MFHP) is a web-based tool from the National Human Genome Research Institute (NHGRI) and the US Surgeon General’s Family History Initiative that helps individuals track their family health history. Using any computer, an Internet connection, and an up-to-date Web browser, individuals add health information to build a drawing of their family tree and a chart of their family health history while exploring disease calculators. The tool is designed to keep all data on the client side to maximize privacy using HTML, CSS, and client-side JavaScript as its principal platforms. Users interact with the tool in a browser to build family health history generating an XML data file (HL7v3 standard) that users store locally or in the cloud. Both the family tree and the chart can be printed and shared with family members and an individual’s doctor.
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MyHealthfinder Steering Committee
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Committee, Work group, Advisory group, or Task Force
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ODPHP, OASH, AHRQ, CDC, HRSA, FDA, CMS, SAMHSA
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NLM, NCI, NIA
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The MyHealthfinder Steering Committee comprises federal partners to help provide insight into the ways MyHealthfinder (an online health resource from HHS/ODPHP) more useful for public health professionals and the clients they serve. This group was formed in December 2020 and meets quarterly.
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Nanotechnology Characterization Laboratory
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Research Initiative
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FDA
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NCI
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The Nanotechnology Characterization Laboratory (NCL) performs and standardizes the preclinical characterization of nanomaterials intended for cancer therapeutics and diagnostics developed by researchers from academia, government, and industry. The NCL serves as a national resource and knowledge base for cancer researchers and facilitates the development and translation of nanoscale particles and devices for clinical applications.
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NAPA Federal Subgroup
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Committee, Work group, Advisory group, or Task Force
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AHRQ, ASPE, ACL, CDC, CMS, FDA, HRSA, IHS
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NIA, NINDS
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This informal group of federal staff meets quarterly, in advance of the meetings of the Alzheimer’s Council for Alzheimer’s Research, Care, and Services, to exchange information on federal activities in the Alzheimer’s disease space and foster collaborations across agencies. From 2014-2021, NIA facilitated these meetings and set the focus on research opportunities; starting in 2022, HHS/ASPE will coordinate these meetings and promote discussion across all NAPA goals, including those related to research, care, supports, and risk reduction.
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NASEM Aging Disability and Independence Forum
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Committee, Work group, Advisory group, or Task Force
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ACL
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NIA
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The National Academies of Sciences, Engineering, and Medicine have formed the Forum on Aging, Disability, and Independence to foster dialogue and address issues of mutual interest and concern related to aging and disability.
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NASEM Forum on Drug Discovery, Development, and Translation
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Committee, Work group, Advisory group, or Task Force
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FDA, ASPR
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NCATS, NINDS, NIAID, NCI, NIMH, OD/OSP
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The Forum on Drug Discovery, Development, and Translation provides a neutral venue for stakeholders in government, academia, industry – including pharmaceutical, biotechnology, and digital health companies, foundations, and disease and patient advocacy to highlight critical issues, spur cross-sector collaboration, and inspire action towards improving the system of drug discovery, development, and translation. Forum-hosted public workshops, action collaboratives, and meetings focus on critical issues and practical approaches for advancing a clinical trials enterprise that is more efficient, effective, patient-centered, and integrated into the health delivery system.
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