WASHINGTON, April 1, 2020 /PRNewswire/ -- Today, 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.
"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
Health care providers may enter data immediately. The ASH RC
COVID-19 Registry has been reviewed by the Western
International Review Board (WIRB) 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
"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.
As this effort continues, the ASH RC may incorporate
non-malignant blood diseases into the Registry.
The Registry is a new addition to the ASH RC Data Hub that
launched in 2018 as a platform designed to accelerate scientific
discovery by gathering and facilitating the sharing of clinical
data on rare blood diseases. In addition to the surveillance data
related to COVID-19, the Data Hub also houses data on more than
3,000 patients with sickle cell disease and more than 2,000
patients with multiple myeloma.
- ASH RC Data Hub COVID-19 Registry for Hematologic
- Enter a Case
- Sample Data Collection Case Form
- ASH COVID-19 Resources
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 improve the 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.
SOURCE ASH Research Collaborative