The ASH Research Collaborative (ASH RC) Data Hub has 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. This 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 people with cancer may be more vulnerable to COVID-19, participating investigators, such as Fred Hutchinson Cancer Research Center, seek to understand what COVID-19 impacts are to these patients—what are risks associated with current or past treatment for hematologic malignancies, for example.
What is the Registry
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 available.
Who is the Director?
Currently, the organization is led by Director Kathleen Hewitt who was with the American College of Cardiology for over two decades.
Who is the ASH Research Collaborative (ASH RC)
ASH RC is a non-profit organization that was established by the American Society of Hematology (ASH) in 2018 to foster collaborative partnerships to accelerate progress in hematology, with the goal of improving the lives of people affected by blood diseases.
The foundation of 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 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. The Network will leverage the Data Hub to collect key information and identify gaps that will help advance SCD research and treatment.
Why Did ASH RC launch the COVID-19 Registry
The research organization seeks to leverage their Data Hub to capture data on people who test positive for COVID-19 and have been, or are currently being treated for hematologic malignancy. As data is received, near real-time observational data summaries will be reported for clinicians on the front line of the COVID-19 pandemic.
COVID-19 Registry Protocol and Case Collection Form
Has this Registry been reviewed by an Institutional Review Board?
Yes. The COVID-19 registry has been reviewed by Western Institutional Review Board and determined to be human subjects research exempt. See a copy of the IRB determination letter.
What about HIPAA Compliance and GDPR?
The Data Hub supports HIPAA. They report in their press release that all data captured is de-identified and comply with HIPAA Safe Harbor regulations and to extent applicable, all steps necessary to comply with GDPR requirements for collecting and anonymizing Personal Data are also followed.
Call to Action: Interested in connecting with ASH RC? See their contact information here.