Welch Medical Library Guides: Finding Datasets for Secondary Analysis: COVID-19 Datasets

What kind of data?

This page offers ways to find datasets on COVID-19. If you're looking for statistical information, please consult the COVID-19 Data page which is located on Finding Health Statistics.

Hopkins Initiatives

COVID-19 Precision Medicine Analytics Platform Registry (JH-CROWN)
The main data source is Johns Hopkins’ electronic medical record, Epic. The registry is refreshed weekly with new and updated data and is available for Johns Hopkins investigators to analyze subsets of the COVID-19 patient population for retrospective analyses. CHSOR members Dr. Jodi Segal and Dr. Caleb Alexander have been using these data.
COVID-19-specific Common Data Model
PCORnet®, the National Patient-Centered Clinical Research Network, is creating a COVID-19-specific Common Data Model that will allow the use of information from patients across PCORnet’s network At Johns Hopkins, Dr. Harold Lehmann leads these activities.
Johns Hopkins COVID-19 Collaboration Platform
Over 400 such trials have been registered on clinicaltrials.gov with dozens being added each day. Many of them are designed to answer similar questions and combining data or aggregating evidence could dramatically increase their efficiency and precision, getting answers to doctors faster and more reliably.
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CovidCP fills this gap by publicizing protocols whose PIs are open to various levels of collaboration: joining forces with other research teams to create a core protocol; admitting new sites under the existing PI and IRB; sharing anonymized interim and/or final data through our partner Vivli with other sites that choose to independently operate a trial under a similar protocol.
National COVID Cohort Collaborative
The National COVID Cohort Collaborative is the partnership among the NCATS-supported Clinical and Translational Science Awards (CTSA) Program hubs and the National Center for Data to Health (CD2H). At Johns Hopkins, Dr. Christopher Chute has taken the lead on this activity.

COVID-19 Datasets

All of Us: COVID-19 research initiative

All of Us is leveraging its significant and diverse participant base to seek new insights into COVID-19—through antibody testing, a survey on the pandemic’s impacts and collection of electronic health record information.

Covid Participant Experience (COPE) Survey - All of Us has deployed a new online survey to better understand the effects of the COVID-19 pandemic on participants’ physical and mental health. This 20- to 30-minute survey is designed both for participants who have been ill with COVID-19 and those who have not, and includes questions on COVID-19 symptoms, stress, social distancing and economic impacts.
Seroprevalence Survey - All of Us will test blood samples from 10,000 or more participants who joined the program most recently, starting with samples from March 2020 and working backward until positive tests are no longer found. The tests will show the prevalence of novel coronavirus exposure among All of Us participants, and help researchers assess varying rates across regions and communities.
EHR data - The program is working to standardize EHR information to help researchers look for patterns and learn more about COVID-19 symptoms and associated health problems, as well as the effects of different medicines and treatments.

Data Access - If you're affiliated with Johns Hopkins and have an eRA Commons account, you can apply to access the data. Check out the data access information here.

4CE: Consortium for Clinical Characterization of COVID-19 by EHR
This website and its contents herein, including all data, visualization, and analysis, is provided to the public strictly for academic research purposes. The data has numerous limitations and confounders that need to be better evaluated as more data is acquired. Reliance on this website for medical guidance or clinical judgement is strictly prohibited.
2020 HRS (Health and Retirement Study) COVID-19 Project
HRS data are available for registered users.
COVID-19 Research Database
The database includes de-identified and limited datasets from medical and pharmacy claims data, electronic health record data, mortality data, and consumer data. This combination amounts to billions of records, including more than 300 million unique patients in claims data, more than 40 million unique patients in EMR data, and over 80% of U.S. mortality data.
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To access the data, you need to apply for registration. After the review, your access will be granted if you meet the criteria.
COVID-19 Research Initiatives in the HRS (Health and Retirement Study) International Network
In this website, you will find
HRS COVID-19 Data Resources including HRS 2020 Interview COVID-19 Module, LB Questionnaire with additional COVID-19 questions and COVID-19 US State Policy Database.
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You will also find
HRS Sister Studies Resources (ELSA, SHARE, LASI, ELSI-Brazil)
Data.CDC.gov
This data catalog by CDC provides links to the datasets on COVID 19 related data.
European COVID-19 Data Platform
Collaborative work by the European Commission and EMBL’s European Bioinformatics Institute (EMBL-EBI), ELIXIR. It consists of three connected components:
- SARS-CoV-2 Data Hubs
- Federated European Genome-phenome Archive
- COVID-19 Data Portal
FAPESP COVID-19 Data Sharing/BR
COVID-19 Data Sharing/BR is an initiative of the São Paulo Research Foundation (FAPESP) in collaboration with the University of São Paulo and participation of Fleury Institute, Sírio-Libanês Hospital and Israelita Albert Einstein Hospital. Its goal is to publish open COVID-19 data to contribute to and foster research related to this topic.
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This initiative makes available three kinds of anonymized data: demographics (gender, year of birth, and region of residency), clinical and lab exams, and hospitalization information - when available (including primary endpoints, and patient transfers).
Figshare: COVID-19 open data
GitHub: COVID-19 Open Repo Data
Harvard Dataverse: COVID-19 Data
ICPSR: COVID-19 Data Repository
ImmPort: COVID 19
ImmPort is funded by the NIH, NIAID and DAIT in support of the NIH mission to share data with the public. Data shared through ImmPort has been provided by NIH-funded programs, other research organizations and individual scientists ensuring these discoveries will be the foundation of future research. It is a must search resource for COVID-19 data shared.
Mendeley Data: Elsevier COVID-19 Research Environment
National COVID Cohort Collaborative (N3C)
The National Institutes of Health has launched a centralized, secure enclave to store and study vast amounts of medical record data from people diagnosed with coronavirus disease across the country. There currently are 35 collaborating sites across the country. Diverse data from individuals tested for COVID-19 and related diseases are provided by institutions and organizations that execute the NCATS Data Transfer Agreement (DTA). Data access will be open to all users under a forthcoming NCATS Data Use Agreement (DUA).
OHDSI: Characterizing Health Associated Risks, and Your Baseline Disease In SARS-COV-2 (CHARYBDIS)
These results are being shared as part of OHDSI’s open science community efforts to characterize disease natural history of COVID-19, for the purposes of enabling collaborative research within the community. Synthesis of the results and interpretation of the findings is underway and manuscripts are being prepared. All manuscripts must be reviewed and approved by all co-authors and data partner contributors prior to submission. Until final publication, all results are to be considered preliminary and subject to change, and may only be used under the terms of use of the respective data partner contributors.
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Synthesis of the results and interpretation of the findings is underway and manuscripts are being prepared. All manuscripts must be reviewed and approved by all co-authors and data partner contributors prior to submission. Until final publication, all results are to be considered preliminary and subject to change, and may only be used under the terms of use of the respective data partner contributors.
PLEASE NOTE: All results are preliminary and subject to change
Open-Access Data and Computational Resources to Address COVID-19
COVID-19 open-access data and computational resources are being provided by federal agencies, including NIH, public consortia, and private entities. These resources are freely available to researchers.
OpenSAFELY
The OpenSAFELY framework is a new secure analytics platform for electronic health records research in the National Health Service (NHS). It is created to deliver urgent results during the global COVID-19 emergency.
Tableau: COVID-19 Data Hub
Vivli: Covid data
Vivli platform has clinical trials on Covid. Johns Hopkins is a member organization.
Zenodo: Coronavirus Disease Research Community - COVID-19

Search Engine & Catalog

COVID Information Commons
The COVID Information Commons serves as an open resource to explore NSF-funded research addressing the COVID-19 pandemic. It does not give a link to data but helps find what to look for if the researchers share their data in the future.
Google Dataset Search
Mendeley Data Search
outbreak.info
Outbreak.info focuses on aggregating all SARS-CoV-2 / COVID-19 information into a single site. Data sources include:
The Immunology Database and Analysis Portal (ImmPort) and The Protein Data Bank archive (PDB).