An online cancer consortium focused on collecting and disseminating information related to COVID-19 infection in patients with cancer has launched. The information has been posted on Cancer Research Catalyst and a dedicated consortium website.1,2
A number of characteristics shared by many cancer patients are also associated with increased risks for COVID-19 viral infection, and more severe clinical sequelae in those infected with COVID-19. These include older age, frequent contact with health care providers and shared health care settings, a high incidence of comorbidities, and the immune-compromising effects of the disease itself and/or interventions to treat cancer or support patients receiving cancer treatment.
While timely access to the results of studies evaluating patients with cancer infected with COVID-19 is urgently needed, such evidence is currently very limited.
In order to address this scarcity of data and expedite dissemination of findings in this setting, a national collaborative effort has been undertaken to facilitate rapid collection of “prospective, granular, uniformly organized information” on patients with cancer infected with COVID-19.2
Called the COVID-19 and Cancer Consortium (CCC19), this clinical registry is similar in design to the Genomics Evidence Neoplasia Information Exchange (GENIE) Project from the American Association for Cancer Research (AACR) — through which real-world data on patients with cancer are shared among participating cancer centers.3,4
To input information into CCC19, participants complete a short 4-part online survey regarding details related to patient demographics, COVID-19 infection and its associated clinical manifestations, and type of cancer and cancer treatment. The information is then stored using a secure RedCap platform. Because no details relating to personal health information are collected, CCC19 is exempt from the rules outlined in the Health Insurance Portability and Accountability Act (HIPAA).2
At the present time, membership in CCC19 includes over 50 institutions predominantly represented by National Cancer Institute (NCI)-designated Comprehensive Cancer Centers, but also involving “large network of community practices.”While CCC19 is currently only open to those based in the United States, approaches to incorporate international participation are being investigated.1,2
“Given that certain findings may have practice-changing implications, we plan to disseminate critical findings immediately through the website, social media, and preprints. We also anticipate using the survey tool to collect long-term outcomes on patients who have recovered from the acute COVID-19 illness, as the effects in the weeks and months after diagnosis remain to be ascertained,” explained Jeremy Warner, MD, MS, associate professor of medicine and biomedical informatics at Vanderbilt University Medical Center, site principal investigator for GENIE and the GENIE Biopharma Consortium, and member of the CCC19 Steering Committee, and Deborah Doroshow, MD, PhD, assistant professor of Medicine at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai, and a member of CCC19.2
- The COVID-19 & Cancer Consortium. https://ccc19us.org/. Accessed March 30, 2020.
- Warner J, Doroshow D. American Association for Cancer Research (AACR). Cancer Research Catalyst. COVID-19 and Cancer Consortium forms to collect and share information. Published March 25, 2020. Accessed March 30, 2020.
- American Association for Cancer Research (AACR). AACR Project GENIE: Powering precision medicine. Accessed March 30, 2020.