ASH, ASCO launch COVID-19 registries
Click Here to Manage Email Alerts
ASH and ASCO launched data registries to capture important insights and guide patient care during and beyond the COVID-19 pandemic.
The ASH RC Data Hub COVID-19 Registry for Hematologic Malignancy is designed to facilitate sharing of near-real-time clinical data among health care providers who are caring for people with the novel coronavirus and either a current or prior blood cancer diagnosis.
“As the COVID-19 pandemic continues, lives depend on the global community urgently coming together to share their experiences,” ASH President Stephanie Lee, MD, associate director of the clinical research division and chair in cancer research at Fred Hutchinson Cancer Research Center, said in a press release. “[Although] we know people with cancer are more vulnerable to the virus, there is little understanding of how current or past treatment for hematologic malignancies changes that risk.”
The global registry includes de-identified patient data that health care providers enter using an online data collection tool on the ASH Research Collaborative website. ASH Research Collaborative members will analyze data often and their reports will be publicly available.
“We encourage health care providers to start submitting their data through the COVID-19 Registry for Malignant Hematology website today and, shortly, to access reports for answers to their questions,” Lee said.
Clinicians may enter case data at www.ashresearchcollaborative.org/covid-19-registry.
The ASCO Survey on COVID-19 in Oncology Registry is intended to provide insights about COVID-19 symptoms and severity among individuals with cancer. Baseline and follow-up data will be used to evaluate how COVID-19 infections affect the delivery of cancer care and patient outcomes.
“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 statement. “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.”
ASCO will report key findings, including characteristics of patients with cancer most affected 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.
“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,” 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 provide baseline data on each patient with cancer who has a confirmed diagnosis of COVID-19, as well as follow-up information about status, treatment and outcomes. Limited patient-identifying data — such as gender, race, ethnicity, ZIP code, age, cancer type and comorbidities — will be collected.
The registry is open to all U.S. oncology practices, and all participating practices will receive nominal financial support to cover research data-entry costs, according to ASCO’s statement.
For more information, go to www.asco.org/asco-coronavirus-information/coronavirus-registry.