Sharing data for broader impact
Access to RECOVER Data
RECOVER researchers are collecting data from thousands of study participants. RECOVER makes this data available to the scientific community and the public at large, allowing those interested to view the data and researchers to analyze it, learn from it, and incorporate it into future studies. By inviting more collaboration, we hope to broaden the learnings RECOVER has already made toward understanding, diagnosing, and treating Long COVID.
Anyone may access aggregated study data without going through an approval process. However, to analyze de-identified individual participant data, researchers must receive authorization for access. This authorization is required to maintain the integrity of the data and protect participant privacy.
Authorized researchers can access RECOVER data from BioData Catalyst® (BDC) and data specific to publications through request portals which are accessed below and where the publications are listed on the RECOVER publications page.
BioData Catalyst (BDC)
RECOVER scientists use BioData Catalyst (BDC), the National Heart, Lung, and Blood Institute’s (NHLBI’s) cloud-based research ecosystem, to store and analyze the scientific data they collect.
BDC currently hosts a subset of survey and laboratory results from the RECOVER adult cohort study. This subset represents more than 14,600 people who took part in more than 92,350 study visits at 79 study sites across the United States.
BDC provides instructions for finding and viewing RECOVER data as well as the steps to request authorization to use de-identified individual participant data for scientific analysis within BDC.
Data Related to RECOVER Publications
Access to the data used for some RECOVER publications may also be available to researchers. These publications and links to request the related data are listed below.
Authorized researchers may request access to the datafile associated with the JAMA publication “Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection” published on May 25, 2023. This file contains more than 3.3 million de-identified data entries and a Data Dictionary.
Request JAMA Publication Dataset
*For Authorized Researchers only. Credentials required.
Other Federal Sources of COVID-19 and Long COVID Data
All of Us
The NIH All of Us Research Program is building one of the largest and most diverse health databases in history. It contains data and research tools to help advance our understanding of the long-term effects of COVID-19, including Long COVID.
The All of Us Researcher Workbench offers authorized researchers access to the COVID-19 Participant Experience (COPE) survey, electronic health record (EHR), wearable, and genetic data.
The All of Us Data Browser offers anyone access to aggregate-level data from those sources.
