TRANSCEND Database Resources
One goal of the Research Design, Compliance and Data Management Core (RDCDC) is to provide access to a variety of databases related to human health.
Rationale
The RDCDC provides information and access to databases that can help researchers develop research projects. Many datasets contain data at the group level, e.g., county or administrative area. Such databases are helpful for hypothesis development and/or generating preliminary data in support of further hypothesis testing. Other databases contain individual-level data that could be suitable for testing specific research hypotheses.
Database Spotlights
- August: Parkinson's Disease Biomarkers Program
- July: Colorectal Cancer Data Dashboard
- June: National Vital Statistics System
- May: The Cancer Imaging Archive
- April: The Cancer Genome Atlas Program
- March: Demographic and Health Surveys
- February: Framingham Heart Study
- January: National Immunization Surveys
- December: YRBSS
- November: Data Resource Center for Child & Adolescent Health
- October: Human Mortality Database
- September: CMS
- August: BRFSS
- July: US Census Bureau
- June: HINTS
- May: NCHS
- April: All of US
- March: HEALTHDATA.gov
- February: SEER
- January: Strong Heart Study
- December: CDC WONDER
Understanding Community Health Centers
Public Use Datasets (PUDs)
List of Public Use Datasets
- US Census Bureau:
Census data about the United States, Puerto Rico, and the Island Areas. - HeathData.gov:
Site managed by the U. S. Department of Health & Human Services that contains data on a wide range of topics, including environmental health, medical devices, Medicare & Medicaid, social services, community health, mental health, and substance abuse. - U.S. Government Open Data:
Data, tools, and resources to conduct research, develop web and mobile applications, design data visualizations and more. - Centers for Disease Control and Prevention:
CDC is the nation’s leading science-based, data-driven, service organization that protects the public’s health. - U.S. Bureau of Labor Statistics:
Data by subject about various labor-related indicators, including benefits, employment, workplace injuries, and more. - Child Health and Development Studies:
CHDS is a project of the Public Health Institute, an independent nonprofit dedicated to improving health
and wellness; studies investigate the relationships between biologic, behavioral, genetic, and environmental factors in early family life to health outcomes in adults. Cohorts have been studied since 1959. - Data Discovery at the National Library of Medicine:
Provides access to data sets from selected National Library of Medicine resources. Users can explore, filter, visualize, and export data in a variety of formats. - Data Resource Center for Child & Adolescent Health:
Includes national and state-level data on hundreds of child health indicators from the National Survey of Children’s Health, National Health Interview Survey Child Component, Survey of Pathways to Diagnosis and Services, and National Survey of Children with Special Health Care Needs. A project coming out of the Bloomberg School of Public Health at Johns Hopkins University. - Health Information National Trends Survey (HINTS):
HINTS, from the National Cancer Institute, collects data about the use of cancer-related information by the American public. Data sets are available for download and secondary analysis. - Health & Medical Care Archive:
The data archive of the Robert Wood Johnson Foundation. Topics include information on health care providers, health care costs and access, substance abuse and health, chronic health conditions, and
more. - Healthcare Cost & Utilization Project (HCUP):
HCUP includes the largest collection of longitudinal hospital care data in the United States, with allpayer, encounter-level information beginning in 1988. These databases enable research on a broad range of health policy issues, including cost and quality of health services, medical practice patterns,
access to healthcare programs, and outcomes of treatments at the national, state, and local market levels. - Medical Expenditure Panel Survey:
Data and information from a set of large-scale surveys of families and individuals, their medical providers, (doctors, hospitals, pharmacies, etc.), and employers across the United States. From the Agency for Healthcare Research and Quality in the U.S. Department of Health and Human Services. - Centers for Medicare & Medicaid Services:
The U. S. Centers for Medicare & Medicaid Services has released a series of publicly available data filesvthat summarize the utilization and payments for procedures, services, and prescription drugs provided to Medicare beneficiaries by specific inpatient and outpatient hospitals, physicians, and other suppliers. - National Center for Health Statistics:
Offers downloadable public-use data files through the Centers for Disease Control and Prevention’s (CDC) FTP file server. Users of this service have access to data sets, documentation, and questionnaires from NCHS surveys and data collection systems. - Native Hawaiian and Pacific Islander National Health Interview Survey:
The NHPI NHIS was a survey in which about 3,000 households containing one or more NHPI residents were surveyed by NHIS field staff using the 2014 NHIS instrument. The NHPI NHIS was an unprecedented opportunity to collect rich and accurate information from a large NHPI sample about the
health of Native Hawaiians and Pacific Islanders in all 50 states. - Research Data Assistance Center:
Provides free assistance to researchers interested in Centers for Medicare and Medicaid Services (CMS)
data. CMS data files are categorized by data category and CMS program. Managed by the University of Minnesota School of Public Health, Health Policy and Management. - Substance Abuse and Mental Health Data Archive:
SAMHSA collects data through multiple sources and surveys and provides access to public-use data files and documentation to support a better understanding of mental illness and substance use disorders in America. - National Cancer Institute Surveillance, Epidemiology, and End Results Program:
SEER collects cancer incidence data from population-based cancer registries covering approximately 47.9 percent of the U.S. population. The SEER registries collect data on patient demographics, primary
tumor site, tumor morphology, stage at diagnosis, and first course of treatment, and they follow up with patients for vital status. - USA Counties Data Files:
Includes data on health, housing, poverty, and vital statistics. From the U. S. Census Bureau. - CDC Wonder:
WONDER online databases utilize a rich ad-hoc query system for the analysis of public health data.
Reports and other query systems are also available. - RECOVER:
RECOVER is a research project that aims to learn about the long-term health effects of COVID. - Pregnancy Risk Assessment Monitoring System:
PRAMS, the Pregnancy Risk Assessment Monitoring System, is used by researchers to investigate emerging issues in the field of reproductive health and by state, territory, and local governments to plan
and review programs and policies aimed at reducing health problems among mothers and infants. - Behavioral Risk Factor Surveillance System (BRFSS):
The Behavioral Risk Factor Surveillance System (BRFSS) is the nation’s premier system of healthrelated telephone surveys that collect state data about U.S. residents regarding their healthrelated risk behaviors, chronic health conditions, and use of preventive services. Established in 1984 with 15 states, BRFSS now collects data in all 50 states as well as the District of Columbia
and three U.S. territories. BRFSS completes more than 400,000 adult interviews each year, making it the largest continuously conducted health survey system in the world. - National Environmental Public Health Tracking Network (Tracking Network):
The National Environmental Public Health Tracking Network (Tracking Network) brings together health data and environmental data from national, state, and city sources and provides supporting information
to make the data easier to understand. The Tracking Network has data and information on environments and hazards, health effects, and population health. - State Cancer Profiles:
State Cancer Profiles is an interactive map engine produced in collaboration between the National
Cancer Institute and Centers for Disease Control and Prevention. It was developed with the idea to provide a geographic profile of cancer burden in the United States and reveal geographic disparities in cancer incidence, mortality, risk factors for cancer, and cancer screening, across different population
subgroups. The target audiences are health planners, policy makers, and cancer information providers
who need quick and easy access to cancer related data and maps to inform and prioritize investments in
cancer control. - The Panel Study of Income Dynamics (PSID):
The study began in 1968 with a nationally representative sample of over 18,000 individuals living in
5,000 families in the United States. Information on these individuals and their descendants has been
collected continuously, including data covering employment, income, wealth, expenditures, health,
marriage, childbearing, child development, philanthropy, education, and numerous other topics. The PSID is directed by faculty at the University of Michigan, and the data are available on this website
without cost to researchers and analysts. - The National Health and Nutrition Examination Survey (NHANES):
The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to
assess the health and nutritional status of adults and children in the United States. The survey is unique
in that it combines interviews and physical examinations. NHANES is a major program of the National Center for Health Statistics (NCHS). NCHS is part of the Centers for Disease Control and Prevention (CDC)
and has the responsibility for producing vital and health statistics for the Nation. - Hospital Care Survey:
The National Hospital Care Survey (NHCS) is designed to provide accurate and reliable health care statistics that answer key questions of interest to health care and public health professionals,
researchers, and health care policy makers.
- Demographic and Health Surveys:
Nationally representative surveys that are designed to collect data on monitoring and impact evaluation
indicators important for individual countries and for cross-country comparisons. Survey types include
demographic and health surveys, service provision assessments, HIV/AIDS indicators, and malaria
indicators. Funded by USAID and implemented by ICF International, a global consulting organization. - Global Health Data Exchange:
The world’s most comprehensive catalog of surveys, censuses, vital statistics, and other health-related
data. - Google Public Data:
A tool for seeking out and sharing publicly available datasets. - Human Life-Table Database:
The Human Life-Table Database (HLD) is a collection of life tables for a multitude of populations covering
many years. Most of the HLD life tables are for national populations produced by national statistical
offices. Some of the HLD life tables refer to certain regional or ethnic sub-populations. Some of the HLD
life tables are non-official life tables produced by researchers. The HLD documents the evolution of
human mortality by providing a quantitative life-table description of mortality patterns. The HLD is part
of the Human Mortality Database project. - Human Mortality Database:
The Human Mortality Database (HMD) is the world´s leading scientific data resource on mortality in
developed countries. The HMD provides detailed high-quality harmonized mortality and population
estimates to researchers, students, journalists, policy analysts, and others interested in the human
longevity. The HMD follows open data principles. - CPSR Inter-University Consortium for Political and Social Research:
A data archive of more than 500,000 files of research in the social sciences from the University of
Michigan. - IPUMS Census and Survey Data:
IPUMS provides census and survey data from around the world integrated across time and space. IPUMS
integration and documentation makes it easy to study change, conduct comparative research, merge
information across data types, and analyze individuals within family and community contexts. Data and
services available free of charge. - Organization for Economic Co-Operation and Development:
Data on different determinants of health around the world from the Organization for Economic Cooperation and Development. - United Nations Demographic and Social Statistics:
The United Nations Statistics Division collects, compiles, and disseminates official demographic and
social statistics on a wide range of topics. Data have been collected since 1948 through a set
of questionnaires dispatched annually to over 230 national statistical offices and have been published in
the Demographic Yearbook collection. - UN Data:
The United Nations Statistics Division (UNSD) of the Department of Economic and Social Affairs (DESA)
offer UN statistical databases through a single-entry point.
- U.S. Census Bureau AIAN Datasets:
Contains data on population characteristics, such as sex, age, average household size, household type, and relationship to householder. - Native Land Information System:
The native land data portal is part of the Native Land Information System and is for the storage and distribution of open data needed by Native people to protect their lands and plan for the future. - National Congress of American Indians (NCAI), The Asterisk Nation:
Founded in 1944, the National Congress of American Indians (NCAI) is the oldest, largest, and most representative American Indian and Alaska Native organization serving the broad interests of tribal governments and communities. - Data.GOV, Tribal Nations Data:
Data, tools, and resources to conduct research, develop web and mobile applications, design data visualizations and more. - U.S. Department of the Interior, Bureau of Indian Affairs:
The purpose of the American Indian and Alaska Native Land Area Representation (AIAN-LAR) Geographic Information System (GIS) dataset is to depict the external extent of Federal Indian reservations and the external extent of associated land "held in trust” by the United States, “restricted fee” or “mixed ownership” status for Federally recognized tribes and individual Native Americans. This dataset includes other land area types such as Public Domain Allotments, Dependent Indian Communities and Homesteads. - IHS Program Statistics:
The Indian Health Service (IHS) Division of Program Statistics is a source of American Indian and Alaska Native demographic and patient care information. - Retrieving IHS Data:
Description of the available methods for data retrieval through Indian Health Services. - National Patient Information Reporting System (NPIRS), IHS:
The National Patient Information Reporting System (NPIRS) serves as the agency’s national data repository. NPIRS is a database of financial, environmental, engineering, administrative and clinical healthcare information gathered from direct IHS, Tribal and Urban healthcare sites & regional administrative offices throughout the Indian Health systems. - Sanitation Tracking and Reporting System (STARS), IHS:
The Division administers a nationwide Sanitation Facilities Construction (SFC) Program that is responsible for the delivery of environmental engineering services and sanitation facilities to American Indians and Alaska Natives. - Urban Indian Health Institute:
Urban Indian Health Institute (UIHI) is leading the way in research and data for urban American Indian and Alaska Native communities. As a Public Health Authority and one of 12 Tribal Epidemiology Centers in the country—and the only one that serves Urban Indian Organizations nationwide—UIHI conducts research and evaluation, collects and analyzes data, and provides disease surveillance to strengthen the health of American Indian and Alaska Native communities. - Urban Indian Health Institute Community Health Profiles:
Data that is part of the Urban Indian Health Institute (UIHI). - National Center on Native American Aging:
The National Resource Center on Native American Aging (NRCNAA) is committed to identifying Native Elder health and social issues. Through education, training, and technical assistance, we assist in developing community-based solutions to improve the quality of life and delivery of related support services to the Native aging population. - Strong Heart Study:
The Strong Heart Study is a study of cardiovascular disease and its risk factors among American Indians. Field centers are located in Arizona, North and South Dakotas, and Oklahoma.
Great Plains BERD
Excellent resources are available at the Great Plains IDeA-CTR. Resources included tutorials on commonly used publicly accessible population-based data set.
National COVID Cohort Collaborative (N3C) 
The N3C Data Enclave is a secure cloud based clinical data and analytics platform for COVID related research, that contains vast amounts of data from a large network of health care organizations to accelerate advances in COVID-19 research and clinical care.
The N3C Data Enclave contains clinical data from the electronic health records of people who were tested for the novel coronavirus or who have had related symptoms. It is the largest limited collection of Electronic Health Records on COVID-19 patients in the world, containing billions of rows of data and millions of patient records.
Benefits of the N3C:
- Access to large scale COVID-19 data from across the nation
- Pilot data for grant proposals
- Team science opportunities for new questions and to test informatics methods
- Access to Domain Teams, statistics, machine learning (ML), informatics expertise
- Training on ML analytics, NLP methods, tools, software, additional datasets
Accessing the N3C:
https://covid.cd2h.org/account-instructions
Please note: TRANSCEND institutions have a Data Use Agreement in place with the N3C
CTR Resources for using the N3C:
https://www.ctrnet.org/n3c-data-enclave/#n3c
Latest information on the N3C:
https://covid.cd2h.org/dashboard/
This COVID 19 Research Resource is available to Investigators – Email kent.p.ripplinger.2@und.edu for more information.