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 Sickle Cell Disease Research
| YEAR | TITLE | TYPE | PRIMARY AUTHOR | PUBLICATION |
|---|---|---|---|---|
| 2025 | SCD Data Hub Report (June 2025) | Report | ASH RC | ASH RC Website |
| 2025 | Living with Sickle Cell Disease Report (September 2025) | Report | ASH RC | ASH RC Website |
| 2025 | The ASH Research Collaborative Sickle Cell Disease Research Network: Past, Present and Future | Manuscript | Charles Abrams | Blood Advances |
| 2025 | Iron Overload is Prevalent, Likely Underdiagnosed, and Undertreated in Sickle Cell Disease: A Real-World Report from the ASH Research Collaborative | Abstract/Manuscript | Samuel Wilson | Blood/TBD |
| 2025 | Uric Acid – A Potent Antioxidant with Protective and Toxic Effects on Renal Function | Abstract/Manuscript | Robert Hagar | Blood/TBD |
| 2025 | Associations Between Chronic Kidney Disease, Proteinuria, and Thrombotic Risk in SCD | Abstract/Manuscript | Mary Sehl | Blood/TBD |
| 2025 | Machine Learning and Multimodal Data for Studying Acute and Chronic Pain in Sickle Cell Disease | In Progress | Ashima Singh | TBD |
| 2025 | Applications of Machine Learning in Sickle Cell Disease Diagnosis | In Progress | Vivien Sheehan | TBD |
| 2024 | Underutilization of Disease-Modifying Therapies in Sickle Cell Disease: A Real-World Analysis from the ASH Research Collaborative Data Hub | Abstract/Manuscript | Omar Niss | Blood/TBD |
| 2025 | Identifying Risk Factors for Pregnancy Outcomes in Females with Sickle Cell Disease | In Progress | Aaron Cheng | TBD |
| 2025 | ASH Guidelines on Dosing and Monitoring of Hydroxyurea for Sickle Cell Disease | In Progress | American Society of Hematology | TBD |
| 2024 | High Concordance Between Physician-Attestation and Manual Data Abstraction for Sickle Cell Diagnosis Type: an ASH Research Collaborative Data Hub Validation Study | Abstract/Manuscript | Alexis Thompson | Blood Advances/TBD |
| 2025 | Electronic Heath Record Phenotypes to Classify Sickle Cell Anemia Versus Other Subtypes of Sickle Cell Disease in the ASH RC Data Hub | Abstract/Manuscript | JJ Strouse | Blood/TBD |
| 2025 | Reassessing Voxelotor Safety and Efficacy: Real-World Outcomes from the ASH Research Collaborative Data Hub | Abstract/Manuscript | Omar Niss, Abdulah Kutlar | Blood/TBD |
| 2024 | Reassessing Voxelotor Safety and Efficacy: Real-World Outcomes from the ASH Research Collaborative Data Hub | Abstract/Manuscript | Omar Niss | Blood/TBD |
| 2024 | Using the ASH Research Collaborative Sickle Cell Disease Data Hub and Learning Community to Determine if the Implementation of Shared Decision-Making Increases the Adoption of Disease Modifying Therapies | In Progress | Lori Crosby | TBD |
| 2024 | Study of Anticoagulation Outcomes and Practice Patterns for Patients with Sickle Cell Disease and Venous Thromboembolism | In Progress | Elizabeth Klings | TBD |
| 2024 | Sickle Cell Kidney Disease: Natural History and Endpoints for Clinical Trials | In Progress | Kidney Health Initiative | In Progress |
| 2024 | Improving the Uptake of Screening for Silent Cerebral Infarcts Among Patients with Sickle Cell Anemia: A Pre-Implementation Study | In Progress | Allison King | In Progress |
| 2024 | Explainable AI-based Prediction of Chronic Kidney Disease as a Long-Term Outcome of Sickle Cell Disease in a Large, Multi-Site Observational Data Cohort | Abstract/Manuscript | Biree Andemariam | Blood/TBD |
| 2024 | Novel Use of a Privacy-Preserving Hashed Identifier to Match Individuals in Different Sickle Cell Disease Registries and Assess Acute Care Utilization | Abstract/Manuscript | Julie Kanter | Blood/TBD |
| 2025 | Identifying Data-Driven Patterns of Renal Function Decline in Sickle Cell Disease | In Progress | Julia Xu | TBD |
| 2025 | Real-World Predictors of Severe Acute Chest Syndrome in Pediatric Sickle Cell Disease: A Pilot Study Using the ASH RC Data Hub | In Progress | Shani Anum | TBD |
| 2025 | Risk Factors and Rate of VenousThromboembolism Among Patients with Sickle Cell Disease | In Progress | Lauren Merz | TBD |
| 2025 | Assessing Timeliness of ED managementof Acute Sickle Cell Pain: Impact of Guideline Adherence on Outcomes andBarriers to Timely Care | In Progress | Ibrahim Gwarzo | TBD |
| 2025 | HbF/F-cell Modulates the Sub-phenotypesof Sickle Cell Disease and is Influenced by Mean Corpuscular Hemoglobin | In Progress | Andrew Wilks | TBD |
| 2023 | New ASH initiatives to improve patient care in the long-overlooked sickle cell disease | Manuscript | Venée N. Tubman | Blood |
Published Multiple Myeloma Research
| YEAR | TITLE | TYPE | PRIMARY AUTHOR | PUBLICATION LOCATION |
|---|---|---|---|---|
| 2025 | A Modular Machine Learning Approach for Myeloma Risk Stratification | In Progress | Arwa Bohra | TBD |
| 2025 | Defining Functional High-Risk Multiple Myeloma in the Era of Modern Induction Therapy | Abstract/Manuscript | Barry Paul,
Carlyn Tan | Blood/TBD |
| 2025 | Impact of Race and Social Deprivation on Outcomes with Modern Day Induction Therapy in Patients with Newly Diagnosed Multiple Myeloma: An ASH Research Collaborative Data Hub Analysis | Abstract/Manuscript | Hamza Hashmi, Meera Mohan | Blood/TBD |
| 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 | Abstract/Manuscript | Saad Usmani | Blood/TBD |
| 2024 | Development of the ASH Research Collaborative Multiple Myeloma Program: A Multicenter, Real-World Evidence Generation Network | Abstract/Manuscript | Shaji Kumar | Blood/TBD |
| 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 | Abstract | William Wood | Blood |
Published ASH Research Collaborative Research
| YEAR | TITLE | TYPE | PRIMARY AUTHOR | PUBLICATION |
|---|---|---|---|---|
| 2025 | Accelerating Novel Therapies for Sickle Cell Disease with RWE: ASH RC Data Hub as a Coordinated Registry Network | Manuscript | William Wood | Blood Advances |
| 2021 | ASH Research Collaborative: a real-world data infrastructure to support real-world evidence development and learning healthcare systems in hematology | Manuscript | William Wood | Blood Advances |
| 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 | Abstract | Pinkal Desai / Aaron Goldbery | Blood |
| 2021 | Risks for Hospitalization and Death Among Patients with Blood Disorders from the ASH RC COVID-19 Registry for Hematology | Abstract | Lisa Hicks | Blood |
| 2020 | A Toolkit for the Collection of Important Thrombosis-Related Data Elements in COVID-19 Clinical Trials | Manuscript | Deborah Siegal | Blood Advances |
| 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 | Manuscript | William Wood | Blood Advances |
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