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.

The Data Hub is currently accepting data through its Sickle Cell Disease and Multiple Myeloma Programs and will make it available for research and analytics in 2023.

Published Research

PROGRAM	TYPE	YEAR	TITLE	PRIMARY AUTHOR	PUBLICATION
CTN	Manuscript	2023	New ASH initiatives to improve patient care in the long-overlooked sickle cell disease	Venèe N. Tubman	Blood
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	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)
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
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

Process Overview

Once the application portal for research and analytic requests is open, the process involves these steps.

Becoming a Data Hub Site

Who Can Join?

A clinical care site is eligible to join the Data Hub if it has the capacity to submit electronic medical record data on its data hub programs’ populations on an ongoing basis.

Sites are expected to update their dataset contributions on a weekly, monthly, or quarterly basis. These regular dataset updates may be accomplished by re-submitting a full, growing dataset at regular intervals.

Data Hub sites must have the internal resources to support ongoing data submissions. Data submission can happen automatically through a variety of tools or manually via an electronic data capture form.

Why Become a Site?

In exchange for regularly submitted data, sites participating in the Data Hub’s Sickle Cell Disease Program receive the following benefits:

Outcome reports specific to their practice showing how quality of care can be improved based on what the data show.
Actionable, targeted feedback for improving the quality of the clinical data collected (learn more about our data quality framework).
Cohort-analysis: identification of groups of prospective participants (cohort populations) for research studies and clinical trials.
Connection to networks of leading researchers, clinicians, and patient advocates in the sickle cell disease community, convened by ASH and ASH RC for the purpose of discovering and disseminating new insights and best practice guidelines.

Learn more about how we’re working with the sickle cell disease community to remove barriers to research.

Learn More

Have Questions?

For more Data Hub information, please visit the following pages:

Request More Information

The Data Hub