The Data Hub
A Source for Real-World Hematology Data
About The Data Hub
The digitization of healthcare data offers a unique opportunity to improve the lives of individuals with hematologic conditions. The ASH Research Collaborative® Data Hub leverages modern data curation techniques to collect and aggregate real-world data, accelerating evidence generation for research and improving clinical practice.
The Data Hub unites multiple stakeholders—including patients, families, clinicians, researchers, government, and industry to build the largest shared resource of real-world data for hematology.
The Data Hub currently includes data on individuals living with sickle cell disease (SCD) and multiple myeloma (MM).
Improving Lives With Real-World Hematology Data
Real-world Data Hub data can generate actionable insights for research, regulatory needs, and quality improvement.
The Data Hub captures real-world data of people living with hematologic conditions from locally curated registries and electronic health records at hospitals and other clinical care sites.
Real-world data better reflect patients’ experiences when compared to traditional research methods, are less costly to generate, and can be used to support a variety of research and regulatory purposes.
See the accepted data submission formats and guidelines.
The Data Hub uses data informatics models that most hospitals and clinical sites already use to extract and transmit data.
Every participating site has a data portal with a dashboard to track their patients’ outcomes overtime and to drive the creation of new research questions. Sites also have access to de-identified, aggregate-level data from all participating sites for meaningful comparisons.
Learn more about the Data Hub’s SCD and MM Programs and dashboards.
Oversight & Data Protection
The protection of participants’ health care data is the ASH RC’s priority. Patient data are stored on secure servers and governed according to the highest standards of research ethics and data privacy.
The Data Hub designated the Western Copernicus Group (WCG) as its institutional review board (IRB) of record, and all participating sites are required to obtain IRB approval prior to submitting data to the Data Hub. The Data Hub’s protocol was reviewed and approved by WCG under the Revised Common Rule.
To learn more about what it means for your patients to participate in the Data Hub:
Watch the Data Hub’s Electronic Consent Video,
Read our one-page overview, and
See how the ASH RC is partnering with the community to improve and advance clinical health care in SCD.
Accelerated Research and Improved Patient Outcomes, Driven by Real World Data
The Data Hub is helping accelerate progress beyond what has ever been possible for people with blood diseases. These data can have broad use, such as informing research studies, supporting new drug development, and enhancing quality improvement initiatives.
Leveraging Real-World Evidence in Hematology
The ASH Research Collaborative® joined federal partners and other stakeholders to explore recommended methods for coordinating clinically relevant and reliable real-world data for genomic therapies for genetic blood disorders. Learn more about the Real-World Evidence Initiative.
ASH RESEARCH COLLABORATIVE
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) in 2017 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology. Learn more about ASH RC