An inclusive, expansive scientific collaboration on the urgent problem of COVID-19 recovery
As momentous as COVID-19 is globally, it is also inescapably consequential for the untold numbers of individuals with a SARS-CoV-2 infection and their loved ones. In addition to the often severe symptoms of the initial infection, many individuals experience PASC, or post-acute sequelae of SARS-CoV2. PASC includes persistent and sometimes debilitating symptoms, often referred to as “long COVID,” and is among the least understood aspects of COVID-19. Most people with a SARS-CoV-2 infection recover quickly, but some people stay sick longer, battling symptoms for months, while others experience new health effects after recovery from their initial infection. We still have much to learn. To better understand, prevent, and treat PASC, the National Institutes of Health created the RECOVER Initiative: Researching COVID to Enhance Recovery.
RECOVER seeks to answer questions such as:
- What does recovery from SARS-CoV-2 infection look like among different groups?
- How many people continue to have symptoms after acute infection?
- How many people develop new symptoms after acute infection?
- What causes these health effects?
- Why do some people develop these health effects while others do not?
- Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such as chronic lung, heart, or brain disorders?
The RECOVER Initiative brings together researchers from across the Nation, referred to as the RECOVER Consortium, who are leading cohort studies related to PASC. The RECOVER cohort studies collectively involve an impressively large number of people whose SARS-CoV-2 and PASC experiences can teach us important lessons about how to treat and prevent the longer term effects of SARS-CoV-2 infection. Diversity and inclusion are fundamental to the success of the Initiative. Consequently, the cohorts will include people from across the US of every racial and ethnic demographic, and across the age span, including children and pregnant women. Patients and caregivers are already engaged in informing the Initiative and will continue to be engaged and included as a source of expertise on the lived PASC experience.
RTI serves as the Administrative Coordinating Center (ACC) for the RECOVER Initiative. In this capacity, we partner with NIH to develop and oversee the Consortium. In the development and launch phase of RECOVER, we:
- Coordinate the process for assembling the research Consortium. In this role, we developed several tools to gather data and evaluate the composition of the meta-cohort.
- Support the launch of RECOVER with the coordination of logistics and materials to inform protocol development.
- Assist NIH with oversight and monitoring of the progress of the RECOVER Initiative and infrastructure toward answering the research questions and meeting key milestones,
- Manage external strategic communications to promote community engagement and participation. We solicit input from patients and stakeholders to ensure that they can actively participate in forming the RECOVER Initiative and driving its evolution.
- Engage PASC survivors in message development and testing to ensure that the authentic recovery journey is represented through digital storytelling.
This effort is moving quickly. Consortium infrastructure was built from February through June of 2021. During Phase 1, the RECOVER Clinical Science Core and RTI supported the investigators who came together to develop protocols for the Consortium studies, and RTI also launched the recoverCOVID.org website. During the fall of 2021, NIH announced RECOVER awardees who collectively will recruit in all 50 states. It is estimated that tens of thousands of study participants could enroll at more than 200 research sites across the nation, with the potential for worldwide impact. The RECOVER research studies are expected to provide insights into many important questions, including how widespread the long-term effects from SARS-CoV-2 infection may be, what are the risk factors, the range of symptoms in those affected, underlying causes, disease outcomes, and promising strategies for treatment and prevention.
RECOVER is a prime example of how RTI supports translational research and science that require complex research networks. Using our scientific, technical and management skills, we build a foundation that enables successful complex research across large networks. By integrating communication science and informatics research, we translate the data and evidence from this complex research into stories that promote informed decision-making and motivate social and behavior change.
RECOVER Patient and Community Engagement Strategy
The RECOVER Initiative aims to improve our understanding of the long-term effects of COVID, enable treatments for people affected by COVID, and find ways to prevent these long-term effects. To do that successfully, patients, caregivers, and community representatives must be involved as partners in the research process to help frame research questions, promote participation in the RECOVER studies, and ensure that people from all communities and backgrounds are included.
The RECOVER Principles of Community Engagement outlines RECOVER Initiative's evidence-based engagement approach, strategy, and structure for engaging with patients and the community.
