The Data Hub
A Source for Real-World Hematology Data
About The Data Hub
The digitization of health care data presents an enormous opportunity to improve the lives of individuals with hematologic conditions. Modern data curation techniques make it easier to collect and aggregate real-world health care data that accelerate evidence generation for research and to enhance clinical practice and patient outcomes.
The Data Hub harnesses the potential of this moment. Multiple stakeholders – individuals living with hematologic conditions and their families, researchers, clinicians, government partners, industry, and the American Society of Hematology (ASH) – are helping to build the largest shared information resource with real-world data to serve the hematology community.
The Data Hub is currently accepting data from participating institutions on individuals living with sickle cell disease (SCD) and multiple myeloma.
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 that reflect the actual experiences of people living with hematologic conditions. These data currently come from electronic health records at hospitals and other clinical care sites. They will also come from insurance claims and patient-reported outcomes collected via apps or remote monitoring.
Real-world data better reflect patients’ experiences than traditional research methods, are less costly to generate, and can be used to support a variety of regulatory purposes.
The Data Hub uses data informatics models that most hospitals and clinical sites already use to extract and transmit data. As new methods become available, the Data Hub will accept those as well. Once a site submits data, a pre-populated electronic case report form is generated allowing for further curation and validation of the data to ensure accuracy.
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 dashboard through which they can access their own data, as well as de-identified, aggregate-level data from all participating sites. Participating sites track their patients’ outcomes over time and discover opportunities to improve the quality of care at their own institution. They also use these data to support research.
View sample dashboards for the Data Hub’s SCD and Multiple Myeloma Programs.
Real-world Data Hub data can generate actionable insights for research, regulatory needs, and quality improvement.
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.
The Vision: Accelerate Research & Enhance Clinical Care
By supporting hematology research, the Data Hub will:
- Decrease the time it takes to bring an experimental drug or treatment approach to the market.
- Help researchers conduct long-term safety studies.
- Provide access to trustworthy data (see the data quality framework).
- Give hospitals and clinics an easier way to identify quality improvement opportunities.
- Address evidence gaps for clinical practice guideline recommendations.
- Establish a network through which participating sites can share information and learn from one another.
- Make it easier for individuals with hematologic conditions to share their data and participate in research.
Becoming a Data Hub Site
The Data Hub is driving improvements in research and quality of care across the Nation
In exchange for the regular submission of data, Data Hub sites have access to aggregate-level data from all participating sites. Sites will also be provided outcome reports specific to their own site data for use in quality improvement initiatives.
Additional benefits to Data Hub sites include:
- Actionable, targeted feedback to improve your clinical data quality.
- Participation in the ASH RC SCD Learning Community.
- Cohort analyses, including identification of groups of prospective participants (cohort populations) for research studies and clinical trials.
- Actionable, targeted feedback to enhance your clinical care and patient outcomes.
- Connection to networks of leading researchers, clinicians, and patient advocates, convened by ASH and the ASH RC for the purpose of discovering and disseminating new insights and best practice guidelines.
For site requirements and more about each program, please visit the following pages:
ASH RESEARCH COLLABORATIVE
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) in 2018 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology.