On April 1, the ASH Research Collaborative's (ASH RC) Data Hub launched the ASH RC Data Hub COVID-19 Registry for Hematologic Malignancy, a global registry with clinical data exclusively on people with COVID-19 and a current or past diagnosis of a hematologic malignancy. The registry is intended to provide near real-time observational data summaries to clinicians on the front line of the COVID-19 pandemic, serving as a resource for patient care through aggregation of global experience.
Stephanie Lee, MD
“As the COVID-19 pandemic continues, lives depend on the global community urgently coming together to share their experiences,” said Stephanie Lee, MD, of Fred Hutchinson Cancer Research Center, who serves as Chair of the ASH RC as well as President of the American Society of Hematology (ASH). “While 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.”
This global public health registry includes de-identified patient data that clinicians and other health-care providers enter using an online data collection tool on the ASH RC website. Data requested in the tool was purposely selected to balance the need for quick data entry, while capturing the most critical information clinicians need to help them care for their patients. ASH RC plans to analyze the data frequently and reports will be publicly accessible.
Health-care providers may enter data immediately. The ASH RC COVID-19 Registry has been reviewed by the Western International Review Board and was determined to be exempt. To the extent applicable, all steps necessary to comply with GDPR requirements for collecting and anonymizing personal data are also being followed. As this effort continues, the ASH RC may incorporate nonmalignant blood diseases into the registry.
“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,” said Dr. Lee.