What Information is Collected in the CCC19 Survey?
As of March 31, 2023; there are 19,275 completed records in the CCC19 registry.
The survey includes the following five data collection forms: 1) Patient Demographics; 2) COVID-19 Details; 3) Cancer Details; 4) Respondent Details; 5) Follow-up.
The schema above illustrates most of the data types collected for each of the clinical forms. Read on for more details:
1) Patient Demographics: This form captures patient demographics such as age, gender, race, ethnicity, country of residence and city and facility where the patient received treatment. If the survey respondent can provide further information, we collect information on urban-rural status of patient’s residence, insurance status, ECOG performance status, smoking status, body mass index, blood type, and details of surgery and concomitant medications prior to COVID-19 diagnosis. An emphasis was given to collect number and details of significant comorbidities which required active treatment at the time of infection diagnosis to tease out severe medical conditions from pre-existing conditions routinely captured in EHR problem lists, which can be variably accurate.
2) Cancer Details: This form captures cancer type, stage, status, treatment details such as duration between treatment and infection, modality (e.g., chemotherapy, immunotherapy), context (e.g., adjuvant, first line non-curative, etc.), and adverse events for some modalities such as immunotherapy. Specific history of cardiopulmonary toxic treatment including radiation is collected. For certain histologies e.g., breast, prostate, and bladder, additional cancer-specific information is collected.
3) COVID-19 Details: Variables included timing, presenting symptoms, laboratory values at diagnosis or index event (e.g., hospitalization), diagnostic testing, initial severity of illness, co-infections, complications, anti-COVID-19 treatments including those administered as part of clinical trials, and clinical status at the time of reporting.
4) Respondent Details: This short form collects information on the relationship of the respondent to the patient being reported, and their general role (e.g., hematologist/oncologist, infectious disease specialist, etc.). No personal details are collected.
5) Follow-Up: A generic follow-up form is repeatable, i.e., new instances can be filled out an indefinite number of times. Suggested time intervals are currently 30-day, 90-day, 180-day, and approximately annually therafter upto 5 years follow-up from COVID-19 diagnosis to include interval medical events, anti-COVID-19 treatments, interval clinical status, final COVID-19 status if known, and effects on anti-cancer treatment plans. Death, time from COVID-19 diagnosis to death, and cause are collected from all patients at each follow-up data entry.
Can I get a copy of the CCC19 data dictionary?
Yes, we have made the CCC19 data dictionary freely available as a static download here, as well as through our continuously updated GitHub repository,
which can be accessed here. We have also provided a list of derived variables for download here; the code to create these derived variables is also available at the GitHub repository.
If you use this information for work outside of CCC19, please cite the following publication:
The COVID-19 and Cancer Consortium - A Systematic Framework to Rapidly Obtain Data on Patients with Cancer and COVID-19:CCC19 Governance, Protocol, and Quality Assurance, Cancer Cell 38 (Dec 14, 2020), https://doi.org/10.1016/j.ccell.2020.10.022
Please note: the static versions of the data dictionary and derived variables list are current as of February 24th, 2023.
Frequently Asked Questions for Potential Participants
Q1: What are the potential benefits of joining CCC19?
The foremost benefit is an opportunity to join colleagues around the country (and soon, around the world) in a common cause of better understanding the unique effects of COVID-19 on patients with cancer, including a history of cancer. We are a rapidly growing community consisting of upwards of a hundred members, united towards this goal. As of March 31st, there are more than 50 institutions participating across 26 states; many of these sites are NCI-designated Comprehensive Cancer Centers. Through pooling our data, we anticipate a rapid accumulation of knowledge. Plans for data sharing within the consortium are still fluid but will include aggregated data, and also granular data for more focused projects. Additional benefits include the possibility of distributed funding, and the opportunity to participate in result publication.
Q2: What are the expectations for CCC19 participating institutions?
The main expectation is that participating institutions will make an effort to identify and report ALL cases of COVID-19 in patients with a current or prior history of invasive malignancy – not just those that are critically ill. In order to fully understand this pandemic, we need to capture data on relatively asymptomatic outpatients as well as those heavily affected by the disease. Likewise, participating institutions will make an effort to avoid duplicated data entry; many institutions are operationalizing this by identifying a “point-person” such as a hematology/oncology fellow or a dedicated data team. Finally, we request data on 30-day and 90-day outcomes so there should be an institutional commitment to continue reporting data even after the acute phase of this pandemic. There is no cost to join this voluntary effort; all help is received gratefully!
Q3: How do we join?
All you need to do is indicate your interest to join and provide contact information for a site PI; we will then send further onboarding instructions. Eligibility is restricted to certain countries; please inquire first if you are located at a non-US-based institution.
More Information About CCC-19
Become a Collaborator
