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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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IOS/ODPHP
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NLM
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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 will meet quarterly.
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Nanotechnology Characterization Laboratory
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Research Initiative
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FDA
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NCI, NIEHS
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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 Research 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.
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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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National Academies Addressing Evidence Gaps in Clinical Prevention (NAM Evidence Gaps project)
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Committee, Work group, Advisory group, or Task Force
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AHRQ
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ODP
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A consensus committee will examine issues in identifying and filling evidence gaps in clinical prevention recommendations made by the U.S. Preventive Services Task Force. The committee will catalog evidence gaps identified in the recommendations; summarize the types of evidence gaps to communicate with funders and researchers; identify potential research strategies that could help close evidence gaps; and suggest approaches for AHRQ and NIH to optimize announcements and requests for applications to accelerate research to close evidence gaps. This initiative is being funded through an NIH contract and co-funded by ODP and AHRQ.
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National Academy of Medicine Committee on Emerging Science, Technology, and Innovation in Health and Medicine
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Committee, Work group, Advisory group, or Task Force
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FDA
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NIMH
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The National Academy of Medicine has recently launched a new Committee on Emerging Science, Technology, and Innovation in health and medicine. The Committee will bring together experts in diverse fields to assess the landscape of emerging scientific advances and technologies in health and medicine and address the potential societal, ethical, legal, and workforce implications of such technologies. The goal of the Committee is to develop a multi-sectoral governance policy framework. The Committee plans to examine examples of emerging technologies and their implications for society, through a multi-sectoral lens. The first point of focus will be on neurotechnology, specifically transcranial direct current stimulation.
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National Action Alliance for Suicide Prevention (NAASP)
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Committee, Work group, Advisory group, or Task Force
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ACL, CDC, HRSA, IHS, OS, OSG, SAMHSA
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NIMH, NIAAA, NIDA, OD/DPCPSI/OBSSR, ODP
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Founded in September 2010, the National Action Alliance for Suicide Prevention (NAASP) is a public-private partnership designed to advance the National Strategy for Suicide Prevention in the United States. The NAASP's Research Prioritization Task Force (RPTF) was charged with developing a process to prioritize suicide prevention research efforts and consider ways to integrate science and service to ensure that suicide deaths decrease significantly within the next decade. The RPTF released the Nation's first suicide research agenda, A Prioritized Research Agenda for Suicide Prevention: An Action Plan to Save Lives. The research agenda includes an overarching goal to advance suicide prevention research more rapidly, seeking ways to reduce suicide deaths and attempts by 20 percent in five years and by 40 percent or greater in ten years. In 2015, the RPTF produced the "U.S. National Suicide Prevention Research Efforts: 2008-2013 Portfolio Analyses." The analyses revealed that investments in suicide research are severely lagging, but there is a growing knowledge base of intervention research. The National Institute of Mental Health (NIMH) Director serves as an ex-officio member of the Executive Committee of the NAASP. NIMH participates in a number of NAASP activities related to identifying research needs for improving risk identification and suicide preventive care within healthcare systems, justice, and school settings.
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