A consortium of six sites in the Boston area will together recruit participants as part of a nationwide study of the long-term effects and prolonged symptoms of COVID-19. Together, the sites will recruit 909 participants over the next year to be part of the greater Boston COVID Recovery Cohort (BCRC). Participants will be followed for the next three years. As part of the National Institutes of Health “Researching COVID to Enhance Recovery” (RECOVER) Initiative, the cohort will help researchers to better understand and define the constellation of long-term complications that can occur after infection and lay the groundwork for preventing and treating symptoms.
The six Boston area sites, led by Brigham and Women’s Hospital, founding member of Mass General Brigham, include Beth Israel Deaconess Medical Center, Boston Medical Center, Cambridge Health Alliance, Tufts Medical Center and Massachusetts General Hospital.
“The Boston COVID Recovery Cohort represents a unique collaboration across health systems,” said contact principal investigator Bruce Levy, MD, chief of Brigham and Women’s Pulmonary Division and site lead at the Brigham. “COVID-19 has laid bare the need for large-scale collaboration — not on the scale of individual investigators or even hospitals, but rather on the scale of health systems. We’ve come together seeking answers to pressing questions, and we hope that the collaborations we are forging can serve as a model for other research endeavors around COVID and beyond.”
Jacqui Lindsay, President of Innovation by Design, says that Boston’s Black and other marginalized communities continue to be hard hit by COVID and are likely to be hit just as hard by long COVID. “I’m excited about what Boston seeks to do as part of this NIH study,” she said. “The Boston COVID Recovery Cohort will not only support major health systems to collaborate in researching and enhancing recovery from COVID, but BCRC will also support these health systems to collaborate with community and equity partners to guide the project and engage Boston’s diverse community with it. The need to understand the prolonged impact of COVID-19 on our communities is urgent. Equally urgent is the need for this work to be equity-focused and done in true partnership with our communities.”
The BCRC will recruit participants with post-acute sequelae of SARS-CoV-2 (PASC), a term used to encompass the range of long-term symptoms that people may experience after having been infected with the virus that causes COVID-19. Researchers are looking to enroll not only patients seen in hospitals but also people in the greater Boston community who may have initially had mild illness when infected but months later have experienced complications. In addition to the participating health systems, the BCRC will be inviting community and equity partners to join to engage and educate the Boston community on long-term symptoms of COVID-19 and to enroll a representative cohort of participants throughout Boston.
BCRC will include people who continue to experience PASC and people who have recovered without long-term symptoms, who will serve as controls. Researchers will also conduct a human tissue study using clinical samples collected at autopsy in order to better understand the virus’ effects on different organ systems. Work on clinical samples collected after autopsy will be led by Robert Padera, MD, PhD, of the Brigham, and James R. Stone, MD, PhD, of Mass General.
“It’s important that we work to expand our knowledge about the long-term impacts of the COVID-19 virus in order to address — and help prevent — another public health crisis,” said Nahid Bhadelia, MD, an infectious diseases physician at Boston Medical Center and the director of the Boston University Center for Emerging Infectious Diseases Policy and Research, and Jai Marathe, MD, MS, an infectious diseases physician and the medical director of the Center for Infectious Diseases and the Long COVID clinic at Boston Medical Center, both site principal investigators at the Boston Medical Center component of BCRC. “This consortium will help us gather the data necessary to better understand the spectrum of how this virus presents in individuals, including among vulnerable populations that were hardest hit by COVID-19.”
For some people, symptoms of infection last weeks or months (sometimes called “long COVID”); for others, new symptoms may appear after the infection has passed. Symptoms can vary widely but often include pain, headaches, fatigue, “brain fog,” shortness of breath, anxiety, depression, fever, chronic cough, and sleep problems.
“Symptoms of PASC can range from shortness of breath to extreme fatigue, problems with memory and thinking, and can severely impact one’s quality of life,” said Gyongyi Szabo, MD, PhD, chief academic officer of BIDMC and Beth Israel Lahey Health; and Janet Mullington, PhD, program director of the Clinical Research Center at BIDMC, both site principal investigators of the BIDMC component of the BCRC. “We have an opportunity to characterize the healing and recovery process of this illness, thus enabling us to develop interventions that will prevent such sequelae in the future and hopefully also return patients currently suffering from PASC back to health.”
The Boston area consortium not only brings together health systems from across the area but also brings together experts across a range of specialties.
“This unique and important study will play a critical role in helping us better understand long COVID and more effectively treat those suffering from its symptoms,” said Michael R. Jordan, MD, MPH, director of the Tufts Medical Center and Tufts University COVID-19 Biorepository and Comprehensive Database. Jordan and Honorine Ward, MD, an infectious disease researcher at Tufts Medical Center and a professor of Medicine at Tufts University School of Medicine, serve as site co-principal investigators of the Tufts Medical Center BCRC site. “Minority and underserved populations shoulder much of the brunt of long COVID, so we look forward to engaging our local Chinatown community and disadvantaged communities throughout our Tufts Medicine network, to ensure they are included in this study and benefit from its findings.”
In addition to defining the clinical syndrome and investigating its causes, researchers will also study underlying social determinants of health.
"Cambridge Health Alliance's racially and ethnically diverse patient population was impacted disproportionately by COVID-19, and having a better grasp on the longer-term impacts of COVID-19 will help us to better serve our communities and connect our patients to solutions that align with their needs and priorities," said Janice John, MHS, MHCDS, site principal investigator and clinical director for PASC at CHA. "It is critical that the voices of the communities that have suffered so much over the last year and a half are partners and at the center of this research, and this collaboration is designed to do exactly that."
“Congress, the NIH, and patient advocates recognized that this is a high priority research area and that, collaboratively, we will be well-positioned to answer important questions about the long-term effects of this pandemic. BCRC and its unprecedented collaboration of health systems with community and equity partners are honored and excited to represent the city of Boston together in this national effort,” said co-principal investigator Ingrid Bassett, MD, MPH, site principal investigator and physician in the Division of Infectious Diseases at Mass General.