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Lupus Federal Working Group (LFWG)
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Committee, Work group, Advisory group, or Task Force
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AHRQ, CDC, FDA, HRSA
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NCCIH, NEI, NHLBI, NIAID, NIAMS, NICHD, NIDCR, NIDDK, NIEHS, NIMHD, NINDS, OD/DPCPSI/ORWH
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The Lupus Federal Working Group, established on behalf of the Department of Health and Human Services (HHS) Secretary by the National Institutes of Health (NIH), facilitates collaboration among NIH components, other Federal agencies, voluntary and professional organizations, and industry groups with an interest in lupus. https://www.niams.nih.gov/about/working-groups/lupus-federal
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Lyme and Tick-borne Diseases Work Group
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Committee, Work group, Advisory group, or Task Force
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CDC, CMS, FDA, OS
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NIAID
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This workgroup involves members from agencies including the Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA), and the National Institutes of Health (NIH) with the purpose of continued coordination and communication of activities, policy updates, events, agency highlights, and other shared interests relating to Lyme disease and other tick-borne diseases.
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Making Medicaid Data More Accessible Through Common Data Models and FHIR APIs
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Resource Development
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ASPE, FDA
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NLM
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This joint agency project involving the FDA and NIH's National Library of Medicine (NLM) aims to develop and publish open-source code to format Transformed Medicaid Statistical Information System (T-MSIS) Research Identifiable Files (RIFs) to the FDA's Sentinel Common Data Model in tandem with NLM's formatting of the T-MSIS RIFs to the Observational Medical Outcomes Partnership Common Data Model. Data quality will be characterized using a harmonized Data Quality Assessment Framework for electronic healthcare data developed in a previously funded Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) project. This project will assess the feasibility of using Fast Healthcare Interoperability Resources (FHIR) Application Programming Interfaces (APIs) to link T-MSIS data with electronic health records.
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Mapping of the Systematized Nomenclature of Medicine-Clinical Terms (SNOMED CT) and International Classification of Disease (ICD) Clinical Terminology
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Resource Development
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CDC
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NLM
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NLM supports the HHS goal for the nationwide implementation of an interoperable health information technology infrastructure to improve the quality and efficiency of health care. Achieving this goal requires that key clinical data elements are captured or recorded in a detailed, standardized form (using standard vocabularies, codes, and formats) as close to their original sources (e.g., patients, health care providers, laboratories, diagnostic devices) as possible. If these standardized clinical data can also be used to generate HIPAA-compliant billing transactions automatically, this will provide another incentive for the adoption of clinical data standards. For the automated generation of bills from clinical data to become a reality, robust mappings from standard clinical terminologies to the HIPAA code sets must be created. To support the transition to ICD-10-CM (International Classification of Diseases, Tenth Revision. Clinical Modification), a map from SNOMED CT to ICD-10-CM is being created. The ICD-10-CM is a system used by physicians and other health care providers to classify and code all diagnoses, symptoms, and procedures recorded in conjunction with hospital care in the United States. https://www.nlm.nih.gov/research/umls/mapping_projects/snomedct_to_icd1…
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Maternal Health Leadership Team
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Committee, Work group, Advisory group, or Task Force
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ASPE, ACF, ACL, AHRQ, CDC, CMS, HRSA, IEA, IHS, OASH, OCR, SAMHSA
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NICHD
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This is an HHS-wide leadership team that meets monthly to discuss ongoing and planned maternal health activities in response to the White House Blueprint for Maternal Health and the HHS Action Plan for Maternal Health. NIH reports out on ongoing maternal health activities and coordinates and collaborates with other HHS agencies as possible.
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Mature Synchrotron Resources for Structural Biology
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Resource Development
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Not Reported
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NIGMS
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Synchrotron radiation is invaluable for structural biology research. To ensure that NIH-supported investigators have access to synchrotron beamlines for structural biology, NIGMS supports mature synchrotron resources providing Macromolecular Crystallography (MX), Small Angle and Wide Angle X-ray Scattering (SAXS and WAXS), fiber diffraction and other synchrotron-based techniques that generate important structural biology data. These resources provide state-of-the-art instrumentation along with user support and training. They are accessible to all biomedical researchers whose projects are vetted through a peer review process. The Mature Synchrotron Resources (MSR) program is limited to continued support of mature NIGMS-supported synchrotron resources that have one or more established techniques and can demonstrate an active user program through publication of research results or structural models.
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Medical Countermeasures Working Group, NIAID/NASA
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Committee, Work group, Advisory group, or Task Force
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Not Reported
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NCI, NHLBI, NIAID
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The purpose of this Working Group (WG) is to bring together experts in radiation countermeasures to look for complementary areas of research across agencies in the following areas: medical countermeasure selection, repurposing, research strategies, and animal models for select endpoints.
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Medical Devices Epidemiology Network (MDEpiNet) TMJ Patient RoundTable Working Group - Steering Committee
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Meeting/ Workshop
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FDA, AHRQ, CMS
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NIDCR
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The Medical Devices Epidemiology Network (MDEpiNet) TMJ Patient-Led RoundTable comprises key stakeholders as partners including patients, the FDA, NIDCR, the Agency for Health Care Research and Quality (AHRQ), the American Association of Oral and Maxillofacial Surgeons (AAOMS), TMJ implant manufacturers, clinicians, scientists, advocacy organizations, and other experts, all under the auspices of Medical Devices Epidemiology Network (MDEpiNet).
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Medical Expenditure Panel Survey (MEPS): Experiences with Cancer Survivorship Supplement
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Committee, Work group, Advisory group, or Task Force
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AHRQ, CDC
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NCI, OD/DPCPSI/OBSSR
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The Medical Expenditure Panel Survey (MEPS) is a national household survey administered by AHRQ to collects data on health care utilization and expenditures. The National Cancer Institute (NCI) has collaborated with CDC, AHRQ, and OBSSR to provide supplemental funding for the MEPS Experiences with Cancer Survivorship Supplement (also known as the MEPS Cancer Self-Administered Questionnaire or CSAQ). Using responses to the National Health Interview Survey (NHIS) question about ever receiving a cancer diagnoses, cancer survivors were asked to complete the MEPS Cancer Supplement in 2011, 2016, and 2017. Responses from this sample of cancer survivors was used to improve the quality of data for estimating the cancer survivorship burden in the United States. Data from the MEPS Cancer Supplement are publicly available without charge and are used to further understand the burden of cancer, its treatment and impact on access to health care, the ability to work and participate in usual activities, health insurance, and quality of care. The collaborative MEPS Cancer Supplement working group, led by NCI, developed an updated version of this questionnaire, with additional questions on employment impacts of cancer, social isolation, survivorship care, and social determinants of health, which will be administered by AHRQ (with the core MEPS survey) in FY2025.
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Medical Imaging & Data Resource Center
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Research Initiative
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FDA
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ARPA-H, NCATS, NCI, NHLBI, NIBIB, NLM
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MIDRC curates medical images and develops AI-ready data and AI/ML algorithms for helping with the clinical management of COVID-19 patients and the pandemic in general. As of this date, over 105,000 highly curated AI-ready COVID image-sets are already available for public access and investigation, about 200,000 more image-sets are in the pipeline, and 24 algorithms are under development. MIDRC-sponsored challenges have enhanced algorithm development. The contract was extended to a third year (ongoing) to include & study patients who have suffered from longer-term symptoms of COVID. MIDRC has expanded interoperability with other NIH ICs (e.g., NCATS, NHBLI) and Argonne National Lab (DOE). An internal NIH advisory board monitors MIDRC progress along with NIBIB. MIDRC is now a national resource of curated medical images of COVID patients, ready to be used to develop clinically useful AI applications. Medical facilities in 24 US states contribute information and interact with MIDRC through the American Association of Medical Physicists, the American College of Radiology, and the Radiological Association of America.
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