R3 Seminar Recap: Using RECOVER data to advance your research

RECOVER researchers designed the initiative’s observational studies to understand and describe (characterize) Long COVID over time and across the lifespan to inform diagnostic tools and treatments. The 48 million datapoints collected in the studies—organized by cohort (or study group) and available for use in approved research studies—will grow in number as RECOVER observational studies continue to collect valuable health data from participants during scheduled time points.

During the seminar, a panel of experts introduced attendees to RECOVER’s data repository and the tools available to access and analyze RECOVER data:

• Principal Investigators Leora Horwitz, MD, and Rachel Gross, MD, MS, from RECOVER’s Clinical Science Core at New York University Langone Health provided overviews of the adult and pediatric observational studies and the types of data collected.
• James Chan, MA, MEd, and Trisha Balan, MS, from RECOVER’s Data Resource Core at Massachusetts General Hospital explained the structure and volume of data available from the adult and pediatric observational studies.
• Emily Hughes, MS, from Harvard Medical School and Cera Fisher, PhD, from Velsera introduced NHLBI BioData Catalyst®, a secure cloud-based ecosystem that hosts RECOVER’s observational study datasets.

Understanding RECOVER observational study data

“If you want to use [RECOVER] data, you need to understand how the studies work.” — Leora Horwitz, MD

Adult observational study

RECOVER’s adult observational study operates at 83 study sites across 33 US states; Washington, DC; and Puerto Rico, with more than 14,700 participants enrolled to date (including almost 2,200 pregnant adults). The study’s flexible design allowed participants to join the study at any time and at any stage of SARS-CoV-2 infection (the virus that causes COVID-19). This approach has created a nationally representative dataset that captures a full spectrum of Long COVID experiences from people from different backgrounds and walks of life.

The adult study collects the same types of data from participants every 3 months through detailed surveys on REDCap, a digital data collection tool. These surveys cover almost 50 types of Long COVID symptoms across multiple organ systems, along with information about demographics, medical history, vaccinations, medications, mental health, and social factors.

In-person visits occur at enrollment, at 3 months and 6 months after infection (for participants enrolled in the study before these time periods), and yearly thereafter, during which participants share biosamples and undergo clinical examination. People who have certain Long COVID symptoms, as well as randomly assigned participants (to reduce bias and ensure the study is representative), go on to have additional testing. Additional tests may be more complicated or invasive.

The study has logged over 140,000 surveys and over 50,000 in-person visits, which include a biosample collection. Watch the webinar on YouTube, starting at minute 6, for a full overview of the adult study and its data structure.

Pediatric observational study

RECOVER’s pediatric observational study follows a similar design adapted for children, adolescents, and young adults (aged 0–25 years) and includes caregiver involvement in data collection and assessments. Almost 23,000 children and caregivers have contributed data to the study across over 100 study sites in the United States, including Puerto Rico.

The pediatric study describes its groups of study participants as a meta-cohort, which brings together data from four distinct groups of participants:

• Main cohort (aged 0–25 years): Pediatric participants newly recruited into the RECOVER study.
• Adolescent Brain Cognitive Development (ABCD) Study cohort (aged 12–17 years): Adolescents participating in the ABCD Study, the largest long-term study of brain development and child health in the United States.
• Multisystem inflammatory syndrome in children (MIS-C) cohort (aged 0–25 years): Children, adolescents, and young adults who had MIS-C and are participating in the National Heart, Lung, and Blood Institute’s (NHLBI’s) COVID MUSIC Study.
• In utero cohort (currently aged 0–3 years): Children born to pregnant adults in RECOVER’s adult study who may have been exposed to SARS-CoV-2 during pregnancy.

The pediatric study is also uniquely dyadic, meaning that caregivers are enrolled alongside children in most cohorts. Like those enrolled in the adult cohort, children and their caregivers could join the study at any time and at any stage of SARS-CoV-2 infection. Children are assessed on different timelines based on the cohort to which they are assigned. The pediatric study collects data from all participants during an initial (or baseline) assessment, including detailed surveys and remote biosample collection. Pediatric study surveys collect data similar to the data collected in the adult study surveys.

A smaller participant group undergoes additional in-person testing at 6 and 12 months after enrollment, and yearly thereafter, to assess cognitive and emotional development. Some participants also undergo more invasive testing at 1 and 2 years after enrollment.

Watch the webinar on YouTube, starting at minute 34, for a full overview of the pediatric study and its data structure.

Cohort data analysis 

Each RECOVER cohort has a detailed study protocol and dataset. Complete analyses of RECOVER data require support from experienced statistical and programming staff.

The Network of Biostatisticians for RECOVER, a nationwide consortium that supports analysis of RECOVER data, developed a free training course that is available to the public. Through lectures and hands-on exercises, this course can help scientific investigators better understand RECOVER data and data structures.

Accessing RECOVER data with NHLBI BioData Catalyst®

NHLBI BioData Catalyst® (BDC) is a secure cloud-based ecosystem with tools and resources to support research analysis and workflows. This ecosystem currently hosts datasets from 3 RECOVER cohorts in the initiative’s observational studies, which include the adult, pediatric, and tissue pathology (autopsy) cohorts. Review the Data Access and Availability Guide (PDF, 177 KB) to understand the types of RECOVER data available and who can access these data.

BDC Powered by PIC-SURE (BDC-PIC-SURE) provides open access to anonymized and aggregated RECOVER data, which allows any person the opportunity to search for and filter observational study variables. Researchers can use this option to understand the feasibility or sample size of their proposed study. No fees or data access requests are required.

A second platform, BDC Powered by Seven Bridges (BDC-Seven Bridges), is a cloud-computing workspace where researchers can analyze participant-level RECOVER data. By using BDC-Seven Bridges, researchers keep the RECOVER data they are analyzing in a secure and trusted National Institutes of Health (NIH) environment.

Access to participant-level RECOVER data and analytical tools through BDC-Seven Bridges requires registration and an approved data access request to protect study participants’ privacy. Researchers can access participant-level RECOVER data by applying and receiving approval for a RECOVER ancillary study.

Watch the webinar on YouTube, starting around minute 54, for an overview of BDC, a demo that shows how to create a cohort (or group for study) using specific study variables in BDC-PIC-SURE,and the benefits of using BDC-Seven Bridges.

RECOVER research opportunities and next steps

NIH is committed to making data collected through RECOVER studies available to researchers, which will help answer important questions about Long COVID. Researchers within and outside RECOVER can apply for 2 opportunities to study the survey data presented during the webinar. Review the Research Opportunities and Data Access Flowchart (PDF, 183 KB) to understand the steps required to apply for these opportunities.

The research opportunities below are structured to respect and protect the privacy of RECOVER study participants, in alignment with the NIH Data Management and Sharing Policy.

Opportunity 1: Apply for a funded RECOVER study

RECOVER awards funding through Research Opportunity Announcements (ROAs) or Notices of Special Interest (NOSIs). Currently, ROA OTA-21-015K is seeking applications for ancillary studies that investigate the biological mechanisms underlying persistent Long COVID symptoms. This opportunity is expected to remain open through April 2027, dependent on the availability of funds.

Learn how to apply for ROA OTA-21-015K.

Opportunity 2: Request approval for an externally funded RECOVER ancillary study

Researchers can apply to conduct independent research projects through RECOVER’s ancillary studies program. Approved ancillary studies should address research questions that are not included in RECOVER study protocols. Please note that researchers must secure funding for their ancillary study outside of RECOVER.

Learn how to apply for a RECOVER ancillary study.

We also invite you to attend Part 2 of this seminar series—Using RECOVER biosamples to advance your research—scheduled for January 13. The second webinar will focus on studying biosamples collected during RECOVER’s adult, pediatric, and tissue pathology (autopsy) observational studies. Register to attend.