The Data Hub
A Source for Real-World Hematology Data
Transforming Sickle Cell Disease
Together, we can improve the quality of life for individuals affected by sickle cell disease (SCD). The Data Hub, as a centralized data source, is improving access to quality clinical data. The ASH Research Collaborative™ is working with the SCD community to remove barriers to research participation and quality improvement. The goal is to make research faster and more impactful.
The Data Hub’s SCD Program includes a Learning Community, a network of sites that contribute data and share best practices to improve patient outcomes. All participating Data Hub sites are invited to join the SCD Learning Community in 2023.
Sickle Cell Disease Program Sites
The Data Hub Sickle Cell Disease Program includes prominent sickle cell disease research institutions and medical centers in the United States.
Northeast
- Boston Medical Center, Boston, MA
- Children’s Hospital of Philadelphia, Philadelphia, PA
- Montefiore Medical Center, Bronx, NY
- Newark Beth Israel Medical Center, Newark, NJ
- NYC Health & Hospitals/Harlem Hospital, New York, NY
- NYC Health & Hospitals/Jacobi Medical Center, Bronx, NY
- NYC Health & Hospitals/Kings County Hospital, Brooklyn, NY
- NYC Health & Hospitals/Lincoln Hospital, Bronx, NY
- NYC Health & Hospitals/North Central Bronx Hospital, Bronx, NY
- NYC Health & Hospitals/Queens Hospital, Queens, NY
- University of Connecticut Health, Farmington, CT
Midwest
Southeast
Southwest
West
Data Captured
The Data Hub uses clinical concepts and data elements for electronic health record codes that align with the most recent United States Core Data for Interoperability (USCDI) standards. This minimizes the data collection burden for participating sites, as all certified electronic health record vendors, providers, and payers are already required to make these elements available for data exchange.
These USCDI entities are included in collaborating sites’ data submissions:
- Allergies & Intolerances – All allergies and intolerances in the medical record
- Assessment and Plan of Treatment – Assessments and plans of treatment back to 2015 for initial transmission, and then all new assessments and plans of treatment moving forward
- Care Team Member(s) – All care team information back to 2015 for initial transmission, and then all new care team information moving forward
- Clinical Notes – All clinical notes back to 2015 for initial transmission, and then all new notes moving forward
- Goals – All goals back to 2015 for initial transmission, and then all new goals moving forward
- Health Concerns – All health concerns back to 2015 for initial transmission, and then all new health concerns moving forward
- Immunizations – All immunizations in the medical record for each patient
- Laboratory – All labs back to 2015 for initial transmission, and then all lab medications tests moving forward
- Medications – All medications back to 2015 for initial transmission, and then all new medications moving forward
- Patient Demographics – All data for historical records and for each new record moving forward
- Problems – All problems (resolved and unresolved) in the medical record for each patient
- Procedures – All procedures in the medical record for each patient
- Smoking Status – All smoking status information in the medical record
- Vital Signs – All vital signs back to 2015 for initial transmission, and then all new vital signs moving forward
We aim to make submission easy through our data submission pathways and models.
Participating sites have access to their own confidential Data Hub Site Portal.
Site Portal tools include:
- Cohort Finder
- Data Export Engine
- Data Quality Report
- Data Submissions Tracker
- Disease-Specific Dashboard
- User Management
Click the Sickle Cell Disease Site Portal Image to Zoom
Near real-time observational summaries are available on the disease-specific Dashboard. Sites can track their own patients, analyze outcomes, and identify ways to improve the quality of care provided to those living with SCD.
The disease-specific Dashboard presents metrics across seven clinical categories that are most valuable for SCD researchers and clinicians to track.
These metrics were established by the Data Hub’s SCD Subcommittee through an iterative process informed by clinicians, regulators, payers, health technology experts, biotech companies, the U.S. Food and Drug Administration and the National Heart, Lung, and Blood Institute.
Below are the clinical categories:
- Acute Care Events
- Cerebrovascular
- Other Sequelae
- Patient Characteristics
- Pharmacotherapy
- Renal
- Transfusion
View the metrics that sites can track on the Disease-Specific Dashboard.
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.