A University of North Carolina Lineberger Comprehensive Cancer Center researcher has helped establish an international database to collect and share information that could help improve care for patients with blood cancer who are positive for COVID-19.
The ASH Research Collaborative’s Data Hub launched the COVID-19 Registry for Hematologic Malignancy to capture data on people who test positive for COVID-19 and have been or are being treated for blood cancer.
“The idea basically was to try to get information to providers as quickly as possible about patients who have COVID-19 and blood cancers,” said UNC Lineberger’s William Wood, MD, MPH, chair of the ASH Research Collaborative Data Hub Oversight Group and co-chair of the ASH RC COVID-19 Registry Task Force. “We wanted to collect de-identified data from multiple sites around the world and make these data available through publicly available visualizations in order to inform care.”
The Registry enables clinicians and other health care providers to enter data using an online data collection tool as well as view aggregate summary reports. The ASH Research Collaborative plans to expand the COVID-19 Registry to accept data on patients with malignant and non-malignant hematologic conditions (past or present) and those who have experienced a hematologic complication associated with COVID-19. The expanded Registry is expected to launch in mid-May 2020.
The American Society of Hematology (ASH) established the ASH RC Data Hub as a platform to accelerate scientific discovery and collaboration by gathering and facilitating the sharing of clinical data on blood diseases. The Data Hub houses data on more than 3,000 individuals living with sickle cell disease and more than 2,000 individuals with multiple myeloma, with additional data submissions incoming and expansion to other disease areas planned.