publication date: Apr. 17, 2020
Amid COVID-19 pandemic, cancer community responds to fill data gap
Richard L. Schilsky, MD, FACP, FSCT, FASCO
Executive vice president, chief medical officer,
American Society of Clinical Oncology
This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage, as well as the latest meeting cancellations, is available here.
As clinicians in a medical specialty that relies on evidence to guide treatment plans for individuals with cancer, we face an unfortunate dearth of data to help steer us during the coronavirus pandemic.
What is the COVID-19 susceptibility among patients with cancer?
What is the severity of infection in cancer patients?
How do we effectively treat our patients during a pandemic, while minimizing the risk of infection in patients and the cancer care workforce?
And, what are the outcomes of individuals with cancer who have COVID-19?
We need answers to these questions—and quickly—to help navigate unchartered waters during the current public health crisis and beyond.
For our part, the American Society of Clinical Oncology has launched the ASCO Survey on COVID-19 in Oncology Registry to help the entire cancer community learn about how the pandemic is impacting the delivery of cancer care as well as the treatment and outcomes of our patients.
The ASCO Registry will help inform cancer care and decision-making now and during future disease outbreaks by collecting data on the pattern of symptoms and severity of COVID-19 among patients with cancer, modification of cancer treatment plans in patients with confirmed COVID-19, and the outcomes of both the viral infection and the cancer in patients followed prospectively.
To make sure we capture more than just a snapshot in time, the ASCO Registry will collect both baseline and longitudinal data on how the virus impacts care and outcomes into 2021. This will allow us to learn about the short-and the long-term effects of COVID-19 and its impact on cancer care and if the virus resulted in specific complications for patients, delayed patients’ ability to get a specific type of cancer treatment, or if certain approaches resulted in better outcomes for patients.
We’ll be able to learn if delays or alterations to treatment plans—disruptions in the standard of care that practices across the United States have had to implement—are having a deleterious impact on our patients. We might also learn that certain methodologies, previously thought undesirable, might actually allow us to deliver care more efficiently or safely without jeopardizing patient outcomes.
When sufficient patient data have been collected and analyzed, ASCO will deliver periodic reports and develop peer-reviewed manuscripts to share key learnings with the cancer community and the broader public. Data on the implementation of telemedicine in the cancer treatment setting and characteristics of de-identified patients with cancer most impacted by COVID-19 will be among these new insights.
Regular reports will provide the oncology community with current information to help inform treatment approaches for patients with cancer who have a confirmed COVID-19 diagnosis. In addition to issuing reports from analysis of the registry data, ASCO’s real-world data platform, CancerLinQ, will periodically report on the characteristics, treatment and outcomes of cancer patients at CancerLinQ subscribing practices who develop COVID-19. These complementary data sources will enable ASCO to provide a comprehensive assessment of the impact of the pandemic on cancer care.
To support the registry, ASCO will be drawing on its extensive network of providers who are caring for patients with cancer and COVID-19 infection. The web-based registry will collect data from patients with all types of cancer who are undergoing all types of cancer treatment and is open to all U.S. oncology practices, including physician-owned, academic, and hospital/health system-owned practices. Consideration will be given to opening patient enrollment to international centers in the future.
Participating practices will complete a baseline data capture form on each patient with cancer who has a confirmed diagnosis of COVID-19, and subsequent follow-up information on status, treatment, and outcomes. Limited patient identifying data, including zip code, date of birth, gender, race, ethnicity, type of cancer, and comorbidities, will be collected in a secure way to make longitudinal analysis possible.
Data from practices participating in the registry will be collected and securely stored on the CancerLinQ platform. The registry has been reviewed by an institutional review board (IRB) and determined to be exempt from IRB oversight as it does not meet the definition of human subjects research.
All participating practices will receive nominal financial support to cover research data-entry costs. The funding is supported by Conquer Cancer, The ASCO Foundation.
Data collection is of the utmost importance during this rapidly evolving global pandemic, so I am very pleased that others in our community are working to address this urgent need to collect and analyze data on the impact of COVID-19.
The COVID-19 and Cancer Consortium is collecting information from cancer centers across the United States and the American Society of Hematology Research Collaborative COVID-19 Registry for Hematologic Malignancy will focus on patients with hematologic malignancies and COVID-19.
I understand that other multi-site registries are in development and many single institution registries have already been launched. All of these efforts are vital to document and learn from the experience of cancer patients with COVID-19.
We applaud all organizations that have developed patient registries and will look for opportunities to collaborate as the cancer community comes together to address this unprecedented crisis.
We encourage all oncology practices to participate in one or more registries based on their specific needs and to reflect the patients they serve. Each of these registries has a different focus and timeline, so participating in multiple registries will not compromise our efforts or prevent all organizations from working together.
Such a collaboration will allow us to learn from every patient, in every practice and practice setting, in every state across the country.
As noted in my previous guest editorial for The Cancer Letter, the ASCO Registry is part of ASCO’s ongoing efforts to provide the most current information and resources on COVID-19 to its members and the larger oncology community to help ensure that individuals with cancer receive high-quality care.
ASCO has compiled a wide range of COVID-19 resources to support clinicians, the cancer care delivery team, and patients with cancer. This information is frequently updated, so check back often.
Learn more about the ASCO Registry.