COVID-19 and Cancer Consortium Forms to Collect and Share Information

Guest post by Jeremy Warner, MD, MS, and Deborah Doroshow, MD, PhD

The world is facing a pandemic unlike any in living memory. For our cancer research community, the novel coronavirus epidemic evokes memories of the 2003 outbreak of Severe Acute Respiratory Syndrome (SARS), which had far-reaching effects including the rescheduling of American Association for Cancer Research (AACR) Annual Meeting. Yet the total reported caseload of SARS was approximately 8,000, with 774 deaths; only 29 cases were identified in the United States.

Jeremy Warner,

COVID-19, the disease caused by the SARS-coV-2 virus, has now affected at least 300,000 people around the globe, and cases are accumulating in an exponential fashion in many countries, including the United States. At the time of this writing, there are at least 500 times as many cases of COVID-19 in the United States as there were of SARS.

Cancer patients have a unique risk profile in this pandemic. Many patients, especially those actively on treatment, have high levels of contact with the health care system. This can include doctor’s visits, phlebotomy, imaging, social work and financial consultations, and infusion room visits for anticancer drugs and supportive care such as blood transfusions. Most of these locations are shared spaces by necessity, putting patients at an increased risk for COVID-19 exposure.

Deborah Doroshow, MD, PhD

Additionally, many, if not all, cancer patients are immunocompromised, through the immunosuppressive effects of anticancer drugs, supportive medications such as steroids, and the cancer itself. Many cancer patients are over 60 years old, putting them in the highest-risk category for COVID-19-related morbidity and mortality. Finally, comorbidities like chronic obstructive pulmonary disease, seen in many patients with lung cancer, further exacerbate our patients’ vulnerability to this novel pathogen.

Early reports on the prognosis for cancer patients are conflicting and, for the most part, non-peer-reviewed. To our knowledge, the largest study published to date includes 18 patients with cancer, who were shown to have increased risk for severe events in multivariate analysis. Lung cancer was the most common malignancy, comprising 5 out of the 18 cases (28 percent). Importantly, only five of the 18 patients were known to be on active systemic anticancer therapy. These numbers are too small to understand the true impact of COVID-19 on cancer patients, particularly those on active treatment.

Given this acute lack of knowledge and concern for extreme vulnerability, the COVID-19 and Cancer Consortium (CCC19) was formed. This national collaborative effort began organically, primarily through social media channels like Twitter. Membership has quickly grown to more than 65 physicians and nurses representing over 30 institutions and organizations in the United States. Most institutional members are large NCI-designated Comprehensive Cancer Centers, although large networks of community practices are also represented. The driving goal of the consortium is to collect prospective, granular, uniformly organized information on cancer patients infected with COVID-19 as rapidly as possible.

The primary means of collecting information is through an online REDCap survey, which is live and accessible through The format and scope of the survey was inspired in part by AACR’s Project GENIE registry, which also utilizes REDCap for its data collection. Project GENIE is a publicly accessible international cancer registry of real-world data assembled through data sharing between 19 of the leading cancer centers in the world. 

The spirit of collegiality and awareness of the power of shared knowledge forms a powerful connection between GENIE and CCC19. Many of GENIE’s participating institutions also signed on quickly to CCC19. The rapid growth of the consortium is also a demonstration of the power of social media for supporting team science endeavors.

The REDCap platform is secure and allows multiple users to simultaneously work on multiple surveys, which can be completed in one sitting or saved in progress for completion at a later time. The survey is comprised of four parts separated into mandatory and optional sections: 1) basic demographics about the patient, including performance status and comorbidities; 2) COVID-19 diagnosis and clinical course; 3) cancer and cancer treatment details; and 4) respondent details. The survey does not collect personal health information and is thus HIPAA-exempt; it is currently open to any domestic user, with international collaborations actively under investigation. Given the burden expected on health care providers over the next weeks to months, the survey was explicitly designed to allow for data collection in under five minutes. However, optional free text fields are provided to allow providers to enter additional information.

We hope to learn a significant amount about cancer patients infected with COVID-19 in a short period of time. Given that certain findings may have practice-changing implications, we plan to disseminate critical findings immediately through the website, social media, and pre-prints. 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.

The impact on cancer patients not directly infected with COVID-19 has also already been significant. Elective surgeries for curable cancer (e.g., early stage localized breast cancer) are being delayed everywhere, leading to massive increases in anxiety and, possibly, impacts on efficacy. Chemotherapy and immunotherapy treatments are being reconsidered or postponed, and the acute shortage of personal protective equipment has led to interim guidance from the Oncology Nursing Society for administration of cancer drugs. Transfusion-dependent patients, such as those with leukemia, are at incredible risk from the acute shortages of blood products around the country. Clinical trials of new cancer therapies, which are critical means of both advancing knowledge and providing potentially lifesaving new medicines to patients, are on hold at many large academic cancer centers.

We hope that readers, in particular health care professionals, will consider donating information to the CCC19 registry on behalf of their affected patients. Although the projects described do not utilize any HIPAA-regulated personal health information, we are happy to help collaborators navigate the process of applying for local Institutional Review Board exemption.

We also want to call attention to other efforts which are beginning to emerge, such as the TERAVOLT (Thoracic cancERs international coVid 19 cOLlaboraTion) effort being led by Drs. Leora Horn (Vanderbilt-Ingram Cancer Center) and Marina Garassino (National Cancer Institute of Milan). Together as a community, we can rapidly gather and disseminate information for the benefit of cancer patients and their caregivers.

Editor’s note: Jeremy Warner, MD, MS, is associate professor of Medicine and Biomedical Informatics at Vanderbilt University Medical Center, where he is the site principal investigator for GENIE and the GENIE Biopharma Consortium; he is a member of the CCC19 Steering Committee. Deborah Doroshow, MD, PhD, is assistant professor of Medicine at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai, and a member of CCC19.