The American Society of Clinical Oncology (ASCO) launched a patient registry to help the cancer community better understand 1) how cancer patients are impacted by COVID-19, and 2) what are the disruptions to cancer care due to the global pandemic. Called the ASCO Survey on COVID-19 in Oncology Registry (ASCO), the registry be used for collection of baseline and follow-up data during the COVID-19 pandemic and ongoing at least through 2021.
TrialSite News has been monitoring the COVID-19-caused disruption to cancer care around the world. As many cancer patients face dire situations, the strains on healthcare systems can have material and even deadly consequences for those in this community with critical cases. Moreover, little is known about how COVID-19 impacts those with cancer—e.g. what are the pattern of symptoms and severity of COVID-19 among patients with cancer. Regardless, ASCO believes cancer patients and their loved ones, as well as care givers will benefit from a credible data trove that supports and contributes to evolving care models and advocacy to ensure the highest standards of care.
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.
Multiple Cancer/COVID-19 Registries
With many different kinds of cancers comes different organizations with specialization in that particular cancer. Hence various groups have already been quite busy with data collection and registry activities. For example, the COVID-19 and Cancer Consortium 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. Are these competitive given there are overlapping interests? Not according to ASCO—the organization declared it will look for opportunities to collaborate with these and other organizations as the cancer community comes together to address this unprecedented crisis.
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 treatments. All participating practices will receive nominal financial support to cover research data-entry costs. The funding is supported by Conquer Cancer, The ASCO Foundation.
Not Just Point-in-Time
The ASCO registry doesn’t just capture point-in-time data on patients with data, but rather has been designed to collect longitudinal data on how the virus impacts care and outcomes during the pandemic.
ASCO President Howard “Skip” Burris III, MD, FACP, FASCO reports, “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.”
Data is Key
Those participating (e.g. practices, hospitals, etc.) 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 (e.g. zip code, race, type of cancer, etc.) will be collected in a secure way to make longitudinal analysis possible.
Registry Building Blocks
The patient data will be collected and securely stored on the CancerLinQ® platform. TrialSite News introduced this data store for oncologists. Additionally, Cancer LinQ® will be capturing data 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®.
As data accumulates ASCO will offer 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. The association will also develop peer-reviewed manuscripts based on the data provided.
Providers Express Interest
ASCO reports that 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).
Call to Action:
ASCO has compiled a number of resources for clinicians, the cancer care delivery team and patients with cancer to support clinicians during this unprecedented crisis. See the link for more information.