The registry, titled the ASCO Survey on COVID-19 in Oncology Registry, will collect both baseline and follow-up data throughout the COVID-19 pandemic and into 2021.
A registry launched by the American Society of Clinical Oncology (ASCO), titled the ASCO Survey on the coronavirus disease 2019 (COVID-19) in Oncology Registry, is seeking to learn more about the pattern of symptoms and severity of the disease among patients with cancer, as well as how its infections affect the delivery of cancer care and patient outcomes.
The registry will collect both baseline and follow-up data throughout the COVID-19 pandemic and into 2021. As sufficient data comes in, ASCO anticipates delivering periodic reports to the cancer community on key learnings. Additionally, ASCO indicated that they plan to develop peer-reviewed manuscripts based on the data provided.
“As this unprecedented public health crisis continues, we’re seeing that certain populations – including individuals with cancer – are more likely to be vulnerable to the worst outcomes from COVID-19,” ASCO President Howard “Skip” Burris III, MD, FACP, FASCO, said in a press release. “The cancer care community needs data on how the virus is impacting our patients, their cancer treatment, and outcomes to inform current cancer care and decision-making for future disease outbreaks. We encourage all oncology practices to participate so that we can learn from every patient, in every practice, in every state across the country.”
The ASCO registry is intended to capture not just point-in-time data on patients with cancer, but longitudinal data on how the virus impacts care and outcomes during the COVID-19 pandemic and into 2021. The registry is open to all US oncology practices, including physician-owned, academic, hospital/health system-owned practices, and hospitals, and will also collect data from patients with all types of cancer who are undergoing all types of cancer treatment.
Those who participate will be asked to complete a baseline data capture form on each patient with cancer who has a confirmed diagnosis of COVID-19, and ensuing follow-up information on status, treatment, and outcomes. Moreover, limited patient identifying data, including zip code, date of birth, gender, race, ethnicity, type of cancer, and comorbidities, will be collected to ensure that longitudinal analysis is possible.
“By looking at longitudinal data on patients, we’ll be able to learn more about the longer-term of effects of COVID-19 and its impact on cancer care,” said Burris. “We hope to learn if the virus resulted in specific complications for patients, delayed patients’ ability to get a specific type of treatment, or if certain approaches resulted in better outcomes for patients.”
The report hopes to summarize aggregated, de-identified data about the demographics of patients with cancer with a COVID-19 infections, the treatments they receive for the infection, their outcomes from the infection as well as any changes made to their cancer treatment plans, and, ultimately, their cancer treatment outcomes.
Notably, the Western Institutional Review Board (IRB) reviewed the ASCO registry and determined that it is exempt from IRB review, as it does not meet the definition of human subject.
In addition to the ASCO registry, other registries have also been developed to conduct research that will help inform future cancer care. The Covid-19 & Cancer Consortium (CCC19) is another resource that is collecting information focused on COVID-19 in patients with cancer from more than 50 cancer centers and organizations across the country. Further, the American Society of Hematology (ASH) Research Collaborative COVID-19 Registry for Hematologic Malignancy was developed with similar aims that concentrate on hematologic malignancies.
New COVID-19 Cancer Registry Aims to Understand Impact on Patients During Pandemic, Inform Future Care [news release]. Alexandria, Virginia. Published April 10, 2020. asco.org/about-asco/press-center/news-releases/new-covid-19-cancer-registry-aims-understand-impact-patients. Accessed April 13, 2020.