New COVID-19 Cancer Registry Aims to Understand Impact on Patients During Pandemic, Inform Future Care

April 10, 2020

The American Society of Clinical Oncology (ASCO) today launched the ASCO Survey on COVID-19 in Oncology Registry (ASCO Registry) to help the entire cancer community learn about the pattern of symptoms and severity of COVID-19 among patients with cancer, as well as how COVID-19 infections impact 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 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,” said ASCO President Howard “Skip” Burris III, MD, FACP, FASCO. “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.”

Once sufficient patient data have been received and analyzed, ASCO will deliver periodic reports to the cancer community and the broader public on key learnings, such as characteristics of patients with cancer most impacted by COVID-19, estimates of disease severity, treatment modifications or delays, implementation of telemedicine in the cancer treatment setting, and clinical outcomes among patients related to both COVID-19 and cancer. ASCO also plans to develop peer-reviewed manuscripts based on the data provided.

The ASCO Registry is designed 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.

“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,” Dr. Burris said. “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.”

Participating practices will be asked to 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. Additionally, CancerLinQ® will be capturing data directly from CancerLinQ-participating practices on COVID-19 infection in their patients with cancer to allow for future analyses. The ASCO Registry uses several data elements that are included in ASCO's mCODE™.

The web-based registry is open to all U.S. oncology practices, including physician-owned, academic, hospital/health system-owned practices, and hospitals, and will collect data from patients with all types of cancer who are undergoing all types of cancer treatment.

All participating practices will receive nominal financial support to cover research data-entry costs. The funding is supported by Conquer Cancer, The ASCO Foundation.

The registry is part of ASCO’s dedicated 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.

The cancer care delivery system is facing an urgent demand to collect and analyze data on the impact of COVID-19. To address this need, multiple efforts are underway to conduct research that will help inform future cancer care. The COVID-19 and Cancer Consortium, for example, is collecting information from more than 50 cancer centers and organizations across the country on the prevalence of COVID-19 in patients with cancer. The American Society of Hematology (ASH) Research Collaborative COVID-19 Registry for Hematologic Malignancy has similar aims with a focus on hematologic malignancies. ASCO will continue to look for opportunities to collaborate with these and other organizations as the cancer community comes together to address this unprecedented crisis.

Eleven practices have already expressed interested in participating in the ASCO Registry: Oncology Hematology Care, Inc. (Cincinnati, Ohio), Winship Cancer Institute of Emory University (Atlanta, Georgia), Virginia Cancer Specialists (Alexandria, Virginia), Levine Cancer Institute, Atrium Health (Charlotte, North Carolina), Mayo Clinic (Rochester, Minnesota; Scottsdale and Phoenix, Arizona; and Jacksonville, Florida), Hartford Healthcare Cancer Institute (Hartford, Connecticut), Fox Chase Cancer Center (Philadelphia, Pennsylvania), Robert H. Lurie Comprehensive Cancer Center of the Northwestern University Feinberg School of Medicine (Chicago, Illinois), Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco (San Francisco, California), Comprehensive Cancer Center at Wake Forest Baptist Medical Center (Winston-Salem, North Carolina), and Lineberger Comprehensive Cancer Center, University of North Carolina (Chapel Hill, North Carolina).

Learn more about the ASCO Registry.