Data Resources for Health & Medical Research

Wide-ranging Online Data for Epidemiologic Research (WONDER) is an easy-to-use interface that makes the information resources of the Centers for Disease Control and Prevention (CDC) available to public health professionals and the public at large. It provides access to a wide array of public health information.

The National Vital Statistics System is the oldest and most successful example of inter-governmental data sharing in Public Health and the shared relationships, standards, and procedures form the mechanism by which NCHS collects and disseminates the Nation's official vital statistics. These data are provided through contracts between NCHS and vital registration systems operated in the various jurisdictions legally responsible for the registration of vital events.

Under the terms of the 2013 Federal Open Data Policy, newly-generated government data is required to be made available in open, machine-readable formats, while continuing to ensure privacy and security. Data.gov is primarily a federal open government data site. However, state, local, and tribal governments can also syndicate metadata describing their open data resources on Data.gov for greater discoverability. Data.gov does not host data directly, but rather aggregates metadata about open data resources in one centralized location. Once an open data source meets the necessary format and metadata requirements, the Data.gov team can pull directly from it as a Harvest Source, synchronizing that source’s metadata on Data.gov as often as every 24 hours.

For more than 20 years, the Health and Retirement Study (HRS) has been a leading source for information on the health and economic well-being of adults over age 50 in the United States. We do this by asking people across the country to participate in the study and tell us about their lives. The HRS is a longitudinal project sponsored by the National Institute on Aging (NIA U01AG009740) and the Social Security Administration. The study director is Dr. David R. Weir of the Survey Research Center at the University of Michigan's Institute for Social Research.

HealthData.gov is dedicated to making high value health data more accessible to entrepreneurs, researchers, and policy makers in the hopes of better health outcomes for all.

An international consortium of more than 750 academic institutions and research organizations, ICPSR provides leadership and training in data access, curation, and methods of analysis for the social science research community. ICPSR maintains a data archive of more than 250,000 files of research in the social and behavioral sciences. It hosts 21 specialized collections of data in education, aging, criminal justice, substance abuse, terrorism, and other fields.

HINTS collects data about the use of cancer-related information by the American public. These data provide opportunities to understand and improve health communication.

The mission of the National Center for Health Statistics (NCHS) is to provide statistical information that will guide actions and policies to improve the health of the American people. As the Nation's principal health statistics agency, NCHS leads the way with accurate, relevant, and timely data.

The FastStats site provides quick access to statistics on topics of public health importance and is organized alphabetically. Links are provided to publications that include the statistics presented, to sources of more data, and to related web pages.

The National Heart, Lung and Blood Institute (NHLBI) Biologic Specimen and Data Repository is the coming together of two entities: the NHLBI Biologic Specimen Repository (NHLBI Biorepository), managed by the NHLBI, Division of Blood Diseases and Resources (DBDR), Transfusion Medicine and Cellular Therapeutics Branch, and the NHLBI Data Repository, managed by the NHLBI, Division of Prevention and Population Sciences (DPPS), Epidemiology Branch. These two programs have always had a similar mission, namely to enhance and facilitate further research in cardiovascular, pulmonary and hematologic conditions by providing access to qualified investigators to stored biospecimen and data collections. The mission of BioLINCC is to facilitate access to, and maximize the scientific value of, the Biorepository and Data Repository and promote the availability and use of other NHLBI funded population-based biospecimen and data resources.

NICHD DASH is a centralized resource for researchers to store and access data from NICHD-funded research studies to use for secondary research. It serves as a mechanism for NICHD-funded extramural and intramural investigators to share de-identified research data from studies in accordance with the NIH Data Sharing Policy and the NIH Genomic Data Sharing Policy.

As biomedical tools and technologies rapidly improve, researchers are producing and analyzing a rapidly increasing amount of complex biological data called “big data.” The Big Data to Knowledge (BD2K) program, was launched in 2014 to facilitate broad use of biomedical big data, develop and disseminate analysis methods and software, enhance training relevant for large-scale data analysis, and establish centers of excellence for biomedical big data. The BD2K Program also supported initial efforts toward making data sets “FAIR” Findable, Accessible, Interoperable, and Reusable.

bioCADDIE - the biomedical and healthcare data discovery index ecosystem. The bioCADDIE team at UCSD is working on developing a data discovery index (DDI) prototype which will index data that are stored elsewhere.

DataMed is a prototype biomedical data search engine. Its goal is to discover data sets across data repositories or data aggregators. In the future it will allow searching outside these boundaries. DataMed supports the NIH-endorsed FAIR principles of Findability, Accessibility, Interoperability and Reusability of datasets with current functionality assisting in finding datasets and providing access information about them.

American FactFinder provides access to data about the United States, Puerto Rico and the Island Areas. The data in American FactFinder come from several censuses and surveys.

"USAFacts is a new data-driven portrait of the American population, our government’s finances, and government’s impact on society."

The Yale University Open Data Access (YODA) Project at the Center for Outcomes Research and Evaluation advocates for the responsible sharing of clinical research data. The Project is committed to open science and data transparency, and supports research attempting to produce concrete benefits to patients, the medical community, and society as a whole. Through experience and input from the public and stakeholders, the YODA Project has iteratively developed a model to make data available to researchers in a sustainable way, in which data sharing becomes a part of the clinical research enterprise of the future. The mission of the YODA Project is to not only increase access to clinical research data, but to promote its use to generate new knowledge.