ASH Research Collaborative’s Data Hub Creates International Data Registry to Help Inform Care for People with Blood Cancers and COVID-19
A global public resource that will facilitate clinical data sharing among health care providers on the front lines of a public health crisis
(WASHINGTON, April 1, 2020) — 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 accessible.”
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 being followed.
“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.
Additional Information
- ASH RC Data Hub COVID-19 Registry for Hematologic Malignancy
- Enter a Case
- Sample Data Collection Case Form
- FAQs
- 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.
Contact:
Leah Enser, American Society of Hematology
[email protected]; 202-552-4927
Help ASH Build an Inclusive Hematology Community!
ASH is committed to building and nurturing a global hematology community and workforce inclusive of diverse perspectives, talents, and experiences as it works toward one collective goal: helping hematologists conquer blood diseases worldwide.
How Can You Help?
Visit your My Account page, make needed updates to your demographic details, and select your preferred level of ASH access to your information; aggregated or individually identifiable, or choose not to provide or share your information. By sharing information about who you are, you will help ASH have a better appreciation of the diverse needs and talents present in the field, and help to build a more inclusive, collaborative hematology community. It will take only a few moments to complete!
Update Access to Demographic Information Learn About Our Mission