Editor’s note: Dr. Hudis hosts the ASCO in Action Podcast, which focuses on policy and practice issues affecting providers and patients. An excerpt of a recent episode is shared below; it has been edited for length and clarity. Listen to the full podcast online or through iTunes or Google Play.
It’s clear that the COVID-19 pandemic poses a threat to people across the globe. Since the worldwide outbreak of the coronavirus, we’ve learned that certain populations—including individuals with cancer—are more likely to be vulnerable to the worst outcomes from COVID-19. However, there’s still so much that we do not understand. We have an urgent need to learn more about how COVID-19 is directly and indirectly affecting the people with cancer whom we serve.
In response, ASCO recently announced the new ASCO Survey on COVID-19 in Oncology Registry, or ASCO Registry for short. This exciting new initiative was developed under the leadership and vision of ASCO’s chief medical officer and executive vice president Dr. Richard L. Schilsky, with support from a dedicated team of professional staff who work for our Center for Research & Analytics (CENTRA).
The ASCO Registry was established so that we can learn more about the pattern of symptoms and severity of COVID-19 among patients with cancer, as well as how the virus is impacting the delivery of cancer care and patient outcomes. We’re not just looking at point-in-time data on patients with cancer. The ASCO Registry will capture longitudinal data on how the virus impacts patient care and outcomes throughout the COVID-19 pandemic and into 2021. We hope that longer-term look will tell us 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.
Once we have sufficient data in the Registry, we plan to release periodic reports to the cancer community and the broader public on key learnings. These reports might include details like the characteristics of patients with cancer most impacted by COVID-19, estimates of the severity of disease among patients with cancer, changes or delays to treatments, and the implementation of telehealth in a cancer care setting. We also hope to be able to report on the clinical outcomes among patients with cancer during the pandemic. And, we might even learn that certain unconventional approaches might allow us to deliver care more efficiently or safely without jeopardizing patient outcomes.
The ASCO Registry is open to all U.S. oncology practices. That includes physician-owned, academic, hospital- or health system-owned practices, and hospitals themselves. 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. Later, practices will be asked to provide follow-up information on each patient’s status, treatment, and outcomes. Data will also be collected on practice-level changes, such as new screening procedures, implementation of telehealth in the practice, and changes to clinical trial enrollment procedures.
The ASCO Registry will securely collect limited patient identifying data, such as zip code, date of birth, gender, race, ethnicity, type of cancer, and comorbidities. By collecting this type of data, it will be possible for us to conduct longitudinal analysis. Data from practices participating in the registry will be collected and securely stored on the CancerLinQ platform.
We’re not alone in our work to better understand the impact of COVID-19 on the cancer care system and the patients we serve. Other registries, including the COVID-19 and Cancer Consortium (CCC19) and the American Society of Hematology (ASH) Research Collaborative COVID-19 Registry for Hematologic Malignancy, have already been launched, and other multisite registries are in development.
We are encouraging 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. We are actively looking for opportunities to collaborate with our colleagues on these initiatives.
The ASCO Registry is part of our ongoing efforts to provide the most current information and resources the virus to our members and the larger oncology community. We’ve developed a wide variety of COVID-19 resources to support clinicians, the cancer care delivery team, and patients with cancer. Some of those resources include patient care guidance for oncologists treating patients with cancer during the COVID-19 pandemic; guidance for practices on how to adjust their policies in response to the virus; and updates on federal activities to respond to this crisis. We’re also co-hosting a weekly webinar series with the Oncology Nursing Society on COVID-19. Each webinar examines a range of issues to help clinicians care for people with cancer during the COVID-19 pandemic.
In times of crisis, it’s especially important that we learn from every patient so that we can refine our approaches and continue to provide the highest quality care.