What Information is Collected in the CCC19 Survey?
As of August 25, 2021; there are 11,328 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, and 180-day 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.