The Data Hub
A Source for Real-World Hematology Data
Guide to Data Submission
Presently, the Data Hub receives electronic health data for the Data Hub’s Sickle Cell Disease (SCD) and Multiple Myeloma Programs.
Accepted Data
The Data Hub can ingest a wide variety of data obtained from inpatient and outpatient clinical sites, directly from patients, and other data repositories.
Data include:
- Electronic medical records
- Clinical and laboratory data
- Genomic or molecular correlates
- Patient-reported outcomes
- Aggregated population data
The Data Hub can accommodate various formats, including:
- Structured electronic health record data
- Patient-reported instruments
- Manual chart abstraction
- Legacy dataset imports
Data Submission Pathways & Models
The Data Hub aggregates and curates data from various electronic health record sources. To reduce the ongoing data submission burden for sites, there are three integration pathways that leverage the most popular interoperability standards in use today. Sites may also submit data through the electronic case report form (eCRF) or through a flat file export.
These models help ensure that each disease-specific program has a harmonized data model, meaning that data with different formatting, naming, and organization frameworks can be brought together and transformed into a cohesive dataset.
Observational Medical Outcomes Partnership (OMOP)
The Data Hub currently accepts data that conforms with the OMOP Common Data Model (version 5.2 or higher). OMOP formatted data is shared with the Data Hub through an encrypted file transfer method, which sites may set up as a manual or automated process.
The Data Hub provides a fully documented command-line tool and submission credentials. Your site can use this tool to validate your files’ conformance to the OMOP specification and submit the files to the Data Hub. The tool’s source code is also publicly available, so your site can also review the tool’s functionality and replicate it instead, if preferred.
Fast Healthcare Interoperability Resources (FHIR)
The Data Hub accepts data conforming to R4 of HL7 FHIR. FHIR data is shared with the Data Hub via secure application programming interfaces (APIs). All client/server interactions specified by FHIR R4 are supported (e.g., push, pull, bulk, etc.).
FHIR Application Programming Interface (API)
The Data Hub offers direct integration with participating sites’ electronic health records systems using industry standard HL7 FHIR APIs. 1Up Health provides the API connection and data capture services for the Data Hub.
Captured data for each site are stored in an Amazon Web Services’ dedicated FHIR store where they are retrieved by the Data Hub for processing. The Data Hub and 1Up Health work with each site’s IT staff to configure the API connection for bulk data transfer with the goal of minimizing the work effort of the IT team. Configuration details are provided for a site’s specific electronic health records system.
Data Curation and Validation
Once the Data Hub receives a submission from a site, a pre-populated eCRF will be generated. This gives sites the opportunity to amend data where there are concerns about completeness and accuracy.
Data Submission Frequency
Sites submitting data to the Data Hub should refresh their data at least quarterly, which can be done automatically or manually. Monthly or weekly submissions are most ideal. Sites can track the status of their data submission through their confidential Site Portal.
Subsequent submissions after the initial submission are cumulative. The Data Hub will treat every submission as a complete replacement of the previous data submission, so that sites will include a growing number of patients in their submissions over time.
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.