The Data Hub
A Source for Real-World Hematology Data
Transforming Data Into Knowledge
The Data Hub helps researchers, clinicians, regulators, industry, and other stakeholders turn real-world Data Hub data into actionable insights to improve outcomes for individuals living with hematologic conditions.
Specifically, the Data Hub helps to:
- Monitor near real-time, longitudinal metrics.
- Identify cohort populations for research studies and clinical trials.
- Perform custom analyses of real-world patient populations.
- Generate hypotheses for observational research.
- Access contemporaneous control groups for research studies.
Investigators from participating sites may submit research requests to use Data Hub data during the Call for Research periods. Investigators with approved research requests are partnered with a statistician to support their data analysis needs.
The ASH Research Collaborative® (ASH RC) welcomes Data Hub Research Requests at any time for sponsored research projects.
To learn more about using Data Hub data for research:
Submit Data Hub Research Requests to info@ashrc.org.
Published Research
| PROGRAM | TYPE | YEAR | TITLE | PRIMARY AUTHOR | PUBLICATION |
|---|---|---|---|---|---|
| ASH RC | Manuscript | 2025 | Accelerating Novel Therapies for Sickle Cell Disease with RWE: ASH RC Data Hub as a Coordinated Registry Network | William Wood | Blood Advances |
| ASH RC | Manuscript | 2021 | ASH Research Collaborative: a real-world data infrastructure to support real-world evidence development and learning healthcare systems in hematology | William Wood | Blood Advances |
| COVID-19 Registry | Manuscript | 2020 | A Toolkit for the Collection of Important Thrombosis-Related Data Elements in COVID-19 Clinical Trials | Deborah Siegal | Blood Advances |
| COVID-19 Registry | Manuscript | 2020 | Outcomes of Patients with Hematologic Malignancies and COVID-19 Infection: A Report from the American Society of Hematology Research Collaborative (ASH RC) Data Hub | William Wood | Blood Advances |
| SCD Research Network | Manuscript | 2025 | The ASH Research Collaborative Sickle Cell Disease Research Network: Past, Present and Future | Charles Abrams | Blood Advances |
| SCD Research Network | Manuscript | 2023 | New ASH initiatives to improve patient care in the long-overlooked sickle cell disease | Venèe N. Tubman | Blood |
| COVID-19 Registry | Abstract | 2021 | Clinical Predictors of Outcome in Adult Patients with Acute Leukemias and Myelodysplastic Syndrome and COVID-19 Infection: Report from the American Society of Hematology Research Collaborative (ASH RC) Data Hub | Pinkal Desai / Aaron Goldbery | ASH Annual Meeting (Blood) |
| COVID-19 Registry | Abstract | 2021 | Risks for Hospitalization and Death Among Patients with Blood Disorders from the ASH RC COVID-19 Registry for Hematology | Lisa Hicks | ASH Annual Meeting (Blood) |
| Multiple Myeloma Research Network | Abstract | 2024 | Feasibility and Implementation of the ASH Research Collaborative’s COVID-19 Outcomes in Myeloma and the Impact of Vaccines (COSMIC): A Decentralized, Real-World Evidence Study for Patients with Multiple Myeloma to Monitor Outcomes Related to COVID-19 Vaccines and Infections | William Wood | Blood |
| Multiple Myeloma Research Network | Abstract | 2024 | Development of the ASH Research Collaborative Multiple Myeloma Program: A Multicenter, Real-World Evidence Generation Network | Shaji Kumar | Blood |
| Multiple Myeloma Research Network | Abstract | 2024 | Initial Results from the ASH Research Collaborative’s COVID-19 Outcomes in Myeloma and the Impact of Vaccines (COSMIC): A Decentralized, Real-World Evidence Study for Patients with Multiple Myeloma to Monitor Outcomes Related to COVID-19 Vaccines and Infections | Saad Usmani | Blood |
| SCD Research Network | Abstract | 2024 | High Concordance between Investigator-Verified Diagnosis and Manual Data Abstraction for Sickle Cell Diagnosis Type: An ASH Research Collaborative Data Hub Validation Study | Alexis Thompson | Blood |
| SCD Research Network | Abstract | 2024 | Innovative Model for Creation and Use of Co-Developed Pain Management Plans for Patients with Sickle Cell Disease | Alexis Thompson | Blood |
| SCD Research Network | Abstract | 2024 | Underutilization of Disease-Modifying Therapies in Sickle Cell Disease: A Real-World Analysis from the ASH Research Collaborative Data Hub | Omar Niss | Blood |
| SCD Research Network | Report | 2025 | Living with Sickle Cell Disease Report (September 2025) | ASH RC | ASH RC Website |
| SCD Research Network | Report | 2025 | SCD Data Hub Report (June 2025) | ASH RC | ASH RC Website |
Process Overview
Once the application portal for research and analytic requests is open, the process involves these steps.
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