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Newborn Screening Coding and Terminology Guide
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Resource Development
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AHRQ, CDC, FDA, HRSA, IOS
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NHGRI, NHLBI, NICHD, NLM
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This ongoing collaboration develops, supplements, and publicizes a free online resource with guidance to help promote the efficient electronic exchange of standardized newborn screening data. Related efforts include studying the screening process for diseases including severe combined immunodeficiency (SCID), lysosomal storage disorders (LSDs), and critical congenital heart disease (CCHD), and developing standard codes for ordering and reporting the results of newborn screening for SCID, CCHD, and other conditions added to the Recommended Uniform Screening Panel of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
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Newborn Screening Federal Partners Committee
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Committee, Work group, Advisory group, or Task Force
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AHRQ, CDC, FDA, HRSA
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NHGRI, NICHD, NLM
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The federal members of the Advisory Committee on Heritable Disorders in Newborns and Children meet monthly to share information about newborn screening activities.
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NGSP (formerly the National Glycohemoglobin Standardization Program)
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Research Initiative
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CDC
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NIDDK
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The purpose of the NGSP (formerly the National Glycohemoglobin Standardization Program) is to standardize Hemoglobin A1c test results to those of the Diabetes Control and Complications Trial (DCCT) and the United Kingdom Prospective Diabetes Study (UKPDS), which established the direct relationships between HbA1c levels and outcome risks in patients with diabetes. NIDDK has provided funding for NGSP research initiatives, and NIDDK Extramural Program staff have served on committees.
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NHAS Quality of Life Indicators Subcommittee
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Committee, Work group, Advisory group, or Task Force
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ACL, CDC, HRSA, SAMHSA
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NIAID, NIMH, OD/DPCPSI/OAR
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A working group of representatives from six federal agencies involved in developing and implementing the NHAS was tasked with carefully listening to community input and evaluating options for possible quality of life measures, data sources, and targets that could be adopted and implemented. As a result of their work and community input, the Office of National AIDS Policy ultimately adopted five indicators that reflect the multi-dimensional nature of quality of life among people with HIV. Indicators address self-rated health status, mental health, food insecurity, employment status, and unstable housing or homelessness.
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NHGRI-Air Force Office of STEM Research
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Other
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Not Reported
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NHGRI
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The NHGRI and the Air Force Office of Scientific Research partnership is a collaboration that creates STEM outreach programming to support high school students from diverse and under-resourced communities. The programming provides the students with hands-on learning opportunities and critical-thinking exercises in STEM topics, including genetics and genomics. The opportunities are designed to inspire and attract a diverse STEM workforce.
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NIA-VA Partnership Meetings
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Meeting/ Workshop
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Not Reported
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NIA
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The National Institute on Aging (NIA) and the U.S. Department of Veterans Affairs (VA), specifically the VA Office of Research and Development (VA ORD), maintain a robust interagency partnership which seeks to synergize high-priority research across the two agencies. NIA and VA convene twice each year to discuss research foci of mutual interest. Examples include the VA-NIA Genetics Initiative for Alzheimer's disease (AD), which harmonizes genetic data in order to advance understanding of genetic risk factors for AD; INviting Veterans InTo Enrollment in Alzheimer's Disease Research Centers (INVITE-ADRC), an NIA- and VA-sponsored initiative to increase veteran participation in aging and dementia research; and a pilot award program to promote mentorship of early-stage physician and clinical psychologist scientists in AD and AD-related dementias research.
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NIAID/CDC Dual Use Research of Concern (DURC) Risk Mitigation Reviews
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Committee, Work group, Advisory group, or Task Force
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CDC
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NIAID
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The Centers for Disease Control and Prevention (CDC) Division of Select Agents and Toxins Division will provide technical assistance in evaluating the sufficiency of the biosecurity and/or biosafety measures incorporated into risk mitigation plans received from institutions, and cross-check risk mitigation plans and research conducted using select agents and toxins against information in the Federal Select Agent Program (FSAP) database.
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NIAID/HESI Workshop: Regulatory T Cell Therapies to Treat Autoimmune and Autoinflammatory Diseases – Challenges and Opportunities
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Meeting/ Workshop
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FDA
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NIAID
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Organizing committee for a workshop to be held November 2024 to bring together industry, academic and governmental scientists to assess key concepts in engineered regulatory T cell therapies. The workshop will address clinical development challenges and opportunities including pharmacological, toxicological, manufacturing, and regulatory considerations.
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NIDA/ABCD
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Other
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Not Reported
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OD/All of Us
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collaborating with programs to leverage cross enrollment and data linkage between programs. Collaboration Type- cross program communication and collaborations
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NIDCD Cancer Moonshot Award
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Research Initiative
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OS
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NCI, NIDCD
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Cancer Moonshot Award to discover a panel of TCRs with various HLA restrictions for cancer and otolaryngic infectious disorders
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