ASH Research Collaborative COVID-19 Registry for Hematologic Malignancy Reaches Milestone of 100 Patient Cases
(WASHINGTON, May 13, 2020) — The ASH Research Collaborative (ASH RC) COVID-19 Registry for Hematologic Malignancy has reached the critical milestone of surpassing its first 100 clinical cases submitted.
The ASH RC COVID-19 Registry, a global public reference tool with de-identified data on people with COVID-19 and a current or past diagnosis of a hematologic malignancy, launched on April 1 to provide near real-time observational data summaries to health care providers on the front lines of the COVID-19 pandemic.
“Our analysis of the preliminary data in the Registry suggests that roughly 75% of reported patients with blood cancer and COVID-19 experience mild to moderate illness; however, preliminary information that we are seeing about death rate in this population is concerning. Based on reports to the Registry so far, the death rate among patients with COVID-19 and blood cancer may be as high as 25%,” said Lisa Hicks, MD, Co-chair on the COVID-19 Registry for Hematologic Malignancy Task Force, and a hematologist at St. Michael’s Hospital in Toronto, Canada. “While these insights are preliminary and require further study, they highlight the need for robust planning, advocacy, and action to minimize the risk that our patients are exposed to this virus, and the need to respond quickly if they are infected.”
Clinicians and other health care providers can enter patient data into the Registry via a data collection tool on the ASH RC website. Data are analyzed on an ongoing basis and summaries are posted on the ASH RC’s publicly available dashboard, which now enables users to filter by hematologic malignancy. Later this month, the Registry will expand to include non-malignant hematologic diseases and complications associated with COVID-19, such as blood clotting.
This observational registry is a new addition to the ASH RC Data Hub platform; the ASH RC Data Hub was launched in 2018 and designed to accelerate scientific discovery by gathering and facilitating the sharing of clinical data on rare blood diseases. In addition to housing data captured to better understand clinical practice and patient outcomes of COVID-19-positive patients, the Data Hub also includes data on multiple myeloma and sickle cell disease.
For more information about the Registry, visit www.ashresearchcollaborative.org/covid-19-registry
About the ASH Research Collaborative
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) to improvethe lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology. The foundation of the ASH RC is its Data Hub, a technology platform that facilitates the exchange of information by aggregating in one place, and making available for inquiry, research-grade data on hematologic diseases. The first research initiative of the ASH RC is a Sickle Cell Disease (SCD) Clinical Trials Network (CTN), which launched in 2019, with the goal of optimizing the conduct of clinical trials research in SCD and leverages the Data Hub to collect key information and identify gaps to advance SCD research and treatment.
Amanda Szabo, American Society of Hematology