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NCATS N3C Collaboration
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Resource Development
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FDA
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NCI, NCATS
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During the COVID pandemic, NCATS established N3C project to create an NIH infrastructure to query national real world databases using an OMOP 5.3.1 central model/database to store query results. This required manual/hard coding of mappings between OMOP 5.3.1 and other national CDM that are being used by the community, specifically PCORNET 5.1, OMOP 5.2, TriNetX, and I2B2/ACT 2.0. New metadata needs to be created in caDSR and new APIs which are very similar/potentially reusable by NCI Cancer Research Data Commons
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NCCOR- National collaborative for childhood obesity research
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Committee, Work group, Advisory group, or Task Force
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CDC
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NHLBI, NCI, NICHD, NIDDK, OD/DPCPSI/OBSSR
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To accelerate progress in reducing childhood obesity in America.
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NCHS-CDC NHANES, Dietary Supplements and Selected Nutritional Biomarkers
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Research Initiative
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CDC
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OD/DPCPSI/ODS
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The National Institutes of Health's, Office of Dietary Supplement has funded the collection of the usage of dietary supplements and selected nutritional biomarkers in the National Health and Nutrition Examination Survey (NHANES) study since 1999. NHANES is a major program of the National Center for Health Statistics (NCHS) - part of the Centers for Disease Control and Prevention (CDC) and is a program of studies designed to assess the health and nutritional status of adults and children in the United States. The prevalence of dietary supplement use in the US is high and increases with age. Data from the NHANES 2017-March 2020 survey indicate that 58.5% of adults aged 20 years and older and 34.8% children aged 0-19 years take at least one dietary supplement. Dietary supplements can and many do contain 100% or more of the daily recommended amounts for nutrients, vitamins and or minerals and therefore, and with such a high percentage of the US population taking them, it's critical that they be collected when assessing dietary intake. If they are not included, dietary intake of nutrients can be underestimated for individuals and on the national level, this can lead to overestimating nutrient deficiencies in the U.S. or underestimating nutrient excesses. NHANES also collects biospecimens which allows for the measurement of biomarkers. The Office of Dietary Supplements has provided funding for several biomarkers over the years and most recently biomarkers for folate status, iodine status and magnesium. Most data from the NHANES survey is released publicly on their website.
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NCHS-CDC NHIS Hearing Supplement
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Health Survey
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CDC
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NIDCD
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"Hearing loss and balance impairment, including inner ear vestibular disorders (vertigo, other dizziness problems) can profoundly affect a persons life and health; impacting the ability to work, interact socially and engage during health care encounters. Adults with hearing and balance disabilities are at risk for decreased quality of life, poorer health status, and diminished health care services received. Targeted interventions delivered in a community or medical setting, provided by audiologists, Ear, Nose, and Throat (ENT) doctors [aka, otolaryngologists-head and neck surgeons], neuro-otologists, occupational and physical therapists, pediatricians, gerontologists and other trained health care workers can potentially mitigate risks for long-term disability. The ability of individuals to hear, like the ability to see, contributes immeasurably to quality of life. The hearing health of individuals affects their educational success, employment opportunities, workplace productivity (and safety), and social and mental health. Hearing loss is the third most common chronic physical condition in the US; it is twice as prevalent as diabetes or cancer. About 12 million (6 percent) American adults report they have serious difficulty hearing or are deaf. Approximately 50 million Americans have hearing loss of mild, moderate, severe, or greater degree in one or both ears. Hearing loss is one of the top three most prevalent chronic conditions in older Americans, together with hypertension and arthritis. As age increases, hearing loss can be so gradual that a person often is unaware of it until the loss becomes difficult to manage. Yet the prevalence of hearing loss doubles with each decade of advancing age. The number is expected to increase as the baby-boomer population ages; by 2030, nearly one in five U.S. residents is expected to be 65 and older. This age group is projected to increase to 88.5 million in 2050, which is more than double the number of adults over age 65 in 2008 (38.7 million). The proposed questions on hearing and balance disorders were asked about children and adults (with some minor changes) in the 2014 National Health Interview Survey (NHIS) Hearing Supplement and the 2016 NHIS Balance and Dizziness Supplement. To maintain validity for cross-survey comparisons, wording has been standardized for hearing and balance questions asked during home interviews, prior to physical exams in mobile exam centers, in NHANES 2015-16, 2017-18, and 2019-23. Advantages to obtaining the information from the NHIS include the large sample size (~13,000 children, ~35,000 adults) in a single year of data collection and the relatively quick availability of the data collected as Public Use files approximately 6 months after data collection ends for NHIS each year. For timely analysis and release of information to the public and, also, to inform scientific research, NHIS is an appropriate nationally representative health survey of the civilian, non-institutionalized US population. These advantages are important as well for tracking and monitoring US Healthy People objectives.
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NCHS-CDC NHIS Taste & Smell and NHIS Voice, Speech, and Language Questionnaire Supplements
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Health Survey
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CDC
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NIDCD
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To provide support to the National Center for Health Statistics (NCHS), CDC for implementation of a nationally representative health interview survey questions inquiring about taste smell and communication disorders and disabilities of voice, swallowing, speech, and language in both childhood and adults. Communication disabilities, including voice, swallowing, speech, and language disabilities, can profoundly affect a person’s life and health; impacting the ability to work, interact socially and engage during health care encounters. Adults with communication disabilities are at risk for decreased quality of life, health status, and health care services received. Targeted interventions delivered in a community or medical setting, including speech-language pathology services, and occupational support can potentially mitigate these risks. Few current epidemiological studies have explored the prevalence of communication disorders and their associated etiologies in the United States. While voice, swallowing, speech, and language disorders are distinct disabilities with different biological mechanisms, they can all cause a person to have difficulty communicating and thus are collectively referred to as communication disorders. Multiple national surveys, including the American Community Survey (ACS), the Current Population Survey – Annual Social and Economic Supplement (CPS-ASEC), and the Decennial Census of Population and Housing, collect information on the prevalence of disability in the United States, but these surveys do not specifically identify or distinguish between voice, swallowing, speech, and language disorders.
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NCHS-CDC-NHANES, Audiometry, Balance, and Words in Noise Component
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Health Survey
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CDC
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NIDCD
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To provide support to the National Center for Health Statistics (NCHS), CDC for balance/vestibular testing and related questions on balance and dizziness problems in the U.S. population aged 40+ years.in the National Health and Nutrition Examination Survey (NHANES Epidemiology Survey), 2018 (pilot testing) and 2019-2020 (implementation). In addition the Audiometry Component of NHANES 2019-2020 will be augmented with a Word in Noise test administered to older adults, 70+ years of age. The prevalence of balance disorders in the US is high and increases with age. Data from NHANES 2000-2004 epidemiological survey indicate that 35.4% (69 million) US adults aged 40 or older have some balance dysfunction; prevalence jumps to 69% among those aged 70-79 years and 85% among those aged 80+ years. The higher risk of balance impairments among the elderly is due to functional changes associated with aging. The control of balance becomes increasingly dependent on visual and proprioceptive cues as we age, making the elderly more vulnerable to falls when those orientation cues are degraded. Individuals with balance trouble have a six-fold increase in the risk of falling; fall risk increases even further among individuals who report symptoms of dizziness. Falls are the leading cause of both fatal and nonfatal injuries among older adults (aged 65 years and older). In 2014, approximately 3 million older adults sought treatment in emergency rooms for fall-related injuries; 800,000 of these patients required hospitalization and 27,000 patients died. Direct medical costs of falls in the US in 2000 were more than $19 billion. Many people who fall develop a fear of falling, even if they are not injured. This fear may cause them to limit their activities leading to reduced mobility and loss of physical fitness, which in turn increases their actual risk of falling. In addition to the elderly, several other groups are at increased risk for balance disorders. Race other than white, lower educational status, diabetes, and hearing loss is associated with poorer balance function. In addition, individuals who have sustained head injuries are likely to suffer from problems with balance and dizziness.
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NCI Cancer Data Standards Repository and Registry (caDSR)
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Committee, Work group, Advisory group, or Task Force
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FDA, ASPE
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NCI, CIT, NEI, NHLBI, NIAMS, NIBIB, NICHD, NIMH, NINDS, NLM, NIDA, NIDCD, NCATS
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The National Cancer Institute (NCI) is collaborating with other NIH institutes to develop and harmonize data standards across NCI and others NIH institutes for basic, translational and clinical research, clinical care, epidemiology, public health, administration, and public information. NCI caDSR provides services to meet NCI needs, and works with other NIH institutes to reuse/share existing content.
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NCI Cervical Cancer "Last Mile" Initiative (LMI)
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Research Initiative
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FDA, CDC
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NCI
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The NCI Cervical Cancer ‘Last Mile’ Initiative (LMI) is a public private partnership between several stakeholders (including federal agencies, industry partners, and professional societies/clinical practice guidelines organizations) to validate self-sampling-based HPV testing approaches as comparable (non-inferior) alternatives to provider-collected cervical specimen for HPV testing in cervical cancer screening, and accelerate progress towards regulatory approvals.
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NCI Clinical Trials and Translational Research Advisory Committee (CTAC)
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Committee, Work group, Advisory group, or Task Force
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CMS, FDA
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NCI
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The Clinical Trials and Translational Research Advisory Committee makes recommendations on the National Cancer Institute-supported national clinical trials enterprise to build a strong scientific infrastructure by bringing together a broadly developed and engaged coalition of stakeholders involved in the clinical trial process. The Committee will provide advice on matters related to the conduct, oversight, and implementation of clinical trials and translational research across the Institute.
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NCI Enterprise Vocabulary Services (EVS) controlled terminology and standards development in collaboration with FDA and international regulatory agencies including NCI/FDA Memorandum of Understanding for Drug Related Information
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Resource Development
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FDA
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NCI
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The National Cancer Institute (NCI) Enterprise Vocabulary Services is working with the US Food and Drug Administration (FDA) to develop and support controlled terminology in several areas. More than 25,800+ FDA terms and codes are stored in the NCI Thesaurus.
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