This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage, as well as the latest meeting cancellations, is available here.
As the healthcare system faces the onslaught of the novel coronavirus SARS-CoV-2, clinicians caring for individuals with cancer face the challenge of a wide gap in knowledge needed to guide decision-making.
While initial reports suggest that individuals with cancer are at greater risk of COVID-19-related sequelae, available data are limited in volume and granularity. As a field that is driven by evidence-based practice, we are hungry for better data to inform clinical decisions and guideline measures to protect our patients and community.
Recognizing an immediate need to take action, a group of investigators assembled together to develop a real-time database to capture information on outcomes of patients with cancer and COVID-19. The initiative, which was initially launched by several enthusiastic Twitter denizens, garnered tremendous momentum within the oncology community.
On March 15, a series of Tweets were launched, and the name “CCC” was coined, which quickly morphed to “CCC19” (the COVID-19 and Cancer Consortium). On March 16, a REDCap survey was built, and initial project application was submitted by Vanderbilt University Medical Center, led by Principal Investigator Jeremy L. Warner, associate professor of medicine and biomedical informatics.
By March 17, the project was approved and registry opened for data submission.
The mission of CCC19 is to rapidly collect and disseminate information about cancer and COVID-19. In addition to VUMC, founding institutions include Dana-Farber Cancer Institute; Fred Hutchinson Cancer Research Center; Sylvester Comprehensive Cancer Center, and Aurora Health Care. The CCC19 is overseen by a steering committee and includes several specialized subcommittees (e.g. informatics, epidemiology and statistics, biomarkers, patient advocacy, funding, publications and others).
Enthusiasm spread through social media and other modern-day communication networks, as there was a genuine eagerness to contribute to the effort. It was outstanding to witness individuals from all sectors of oncology come together under such a unified effort.
It was collaboration at its finest. The bureaucratic walls came tumbling down as investigators worked closely with their local institutions to ensure regulatory protocols were in place in an expeditious manner to allow participation.
The website (www.ccc19.org) was launched shortly after conception, and the official logo established on March 27. By May 18, two months after launch, the database has over 2,000 patients and over 100 academic institutions and community practices had joined the effort.
Additionally, CCC19 has integrated involvement from the nursing community and patient advocates to ensure the deliverables directly align with the needs of a broader oncology network.
The CCC19 registry is designed to help the community understand how the COVID-19 pandemic is impacting outcomes for patients with cancer. Key immediate questions that the registry aims to answer include:
Which patients with cancer are most/least susceptible to COVID-19 complications?
How do cancer-directed treatments, including surgery, radiation, and systemic therapy impact COVID-19 outcomes?
How do alterations in cancer care delivery impact COVID-19 outcomes in patients?
The information gained through the CCC19 registry will provide large-scale real-world data to guide clinical decision-making, develop strategies to mitigate risk for patients, and understand how we can continue to deliver high-quality cancer care for patients in a safe and effective manner.
The CCC19 registry captures granular data on patient characteristics, COVID-19 outcomes, and cancer outcomes. Longitudinal data collection from the CCC19 registry allows for the development of readiness measures as we embark on the recovery phases of the pandemic.
Additionally, long-term data collection will allow us to investigate the impact of COVID-19 and disruptions in care delivery on cancer-related outcomes. The future opportunity for health care provider and patient reporting measures will also be critical for shaping rehabilitation strategies.
CCC19 will deliver regular reports in the form of peer-reviewed manuscripts, highlighting the key findings of our efforts. A unique aspect of the consortium is the democratic process for investigator-initiated projects seeking to provide a better understanding to unanswered questions in the field.
The expansive network will allow for multiple simultaneous investigations to take place, allowing for rapid discovery and delivery of information. Aggregate data are also planned to be publicly released after a six-month embargo period, and investigators of all stripes are encouraged to join the consortium (academic affiliation is encouraged, but not formally required).
Our first results will be presented as a late-breaking abstract at the virtual 2020 ASCO Annual Meeting.
The CCC19 registry collects information from SARS-CoV-2 positive or presumed positive COVID-19 patients of all cancer types. De-identified patient data is captured in a secure REDCap database. All US and Canadian oncology practices, both academic and community, are welcome to participate.
Understanding the global impact of this pandemic, efforts are being developed to expand to additional North and South American countries as well. Data collection and broad involvement within the oncology community is critical to the success of the registry.
To more efficiently collect information globally, a partnership between CCC19 and ESMO-CoCARE registry has been established.
CCC19 complements the efforts of other important multi-institutional registries, including those of the American Society of Clinical Oncology, American Society of Hematology, and National Cancer Institute.
During these unprecedented times, it is critical that we unite as a community with the likeminded mission to improve outcomes for our patients. To learn more about the CCC19 registry and how you can participate in our unified efforts, visit our website at www.ccc19.org.
