CCC19 Registry Launched to Understand COVID-19 in Patients with Cancer

A multi-institutional collaborative registry, titled the CCC19 Registry, was created in order to quickly gather details from healthcare professionals related to patients with cancer suspected or confirmed of having the novel coronavirus (COVID-19) resulting from infection with the SARS-CoV-2 virus. 

The survey, which was launched by principle investigator Jeremy L. Warner, MD, MS, and colleagues, is comprised of 4 parts, including patient demographic information, COVID-19 diagnosis and course of illness, cancer diagnosis and treatment details, and information about the healthcare professional.

Outside of Warner, the collaborative effort included Aakash Desai, MD, an internal medicine resident at University of Connecticut and soon-to-be fellow at Mayo Clinic; Ali Khaki, MD, fellow at University of Washington, Fred Hutchinson Cancer Research Center; Gary Lyman, MD, of Fred Hutchinson Cancer Research Center; Nicole Kuderer, MD, of Fred Hutchinson Cancer Research Center; Mathew Galsky, MD, of Mount Sinai Health System; Paul Fu Jr., MD, of City of Hope; Gilberto Lopes, MD, of Sylvester Comprehensive Cancer Center, University of Miami Health System; and Toni Choueiri, MD, of Dana-Farber Cancer Institute.

“This is clearly a big team effort; I’m really impressed by the hematology and oncology community coming together like this, and I hope this can prove as something useful, both for immediate clinical impact as well as longer term knowledge,” said Warner, an associate professor of medicine at Vanderbilt University Medical Center.

Though the consortium is still in its early days, 25 cancer institutions have already begun participating in answering the survey questions. The survey is open to any healthcare provider; however, and the biggest worry is the issue of duplicated responses. Warner indicated though that the team is prepared for this if it should arise, and they are still encouraging professionals to participate in the consortium.

“We’re encouraging anybody and everybody who is a healthcare professional who is caring for a patient diagnosed with COVID-19 to consider reporting,” Warner said. “There’s sort of a balance between being open and having noise introduced, right? I think we’re trying to make it clear from the beginning that you should be a healthcare professional if you’re filling it out.”

Even with the survey itself not having been live long, Warner said that there have already been tweaks made to the content. He noted that as we continue to learn more about this disease, they will continue to alter the survey as well. 

“I think we’re still trying to balance the complexity with the challenge of actually getting people to fill it out,” said Warner. “But we have added additional questions, and we’re trying to keep pace obviously with the emerging knowledge that’s coming out of the literature and other areas.”

Looking at the impact of COVID-19 on patients with cancer in a more general sense, Warner suggested that though the overall impact remains to be determined for this population, there are already issues arising for these patients. Specifically, events such as the cancellation of surgeries and the harsh decrease in visitor allowance could have a large impact.

“It’s already impacting them, not because they have cancer, but because of decisions that are being made at the institutional levels. For example, my institution actually today enacted a no-visitor policy,” Warner explained. “To me, that’s really concerning because I think one of the most important things that I know as a hematologist and oncologist is that it’s really devastating to get a cancer diagnosis. It’s really hard to retain that information, especially with that first visit, but even after that, especially when there’s bad news that might come up at a visit, that’s really where family and caregivers come in. To be there, to be present in the room, not only to provide emotional support, but to actually retain the information that’s coming to the patients, so that worries me a lot.”

Given the severe lack of testing and even PPE equipment in some areas, Warner said that the impact, though currently unknown, will most likely be seen in the more rural or heavily urban areas. However, he suggests that we should be doing more types of testing in order to better understand the virus.

“I think personally that we need to really push to develop serology tests as well, so that we can actually know who has already been infected and may not have come to attention, but is now recovered,” said Warner. “And then we’ll actually start to get a true sense of how broad the impact has been on the population.”