The ASH RC’s Commitment to Data Quality

Understanding and managing data quality is essential for ensuring data in the Data Hub are reliable and relevant.

Guided by a data quality framework, the ASH Research Collaborative™ (ASH RC) works closely with sites to ensure that Data Hub data are accurate, complete, and consistent. The framework addresses data quality domains that align with the U.S. Food and Drug Administration guidance for quality in electronic health records and medical claims data and registries to support regulatory decision-making.

Data Quality Reports

To help sites ensure their data accurately reflect their patient population, two Data Quality Reports are provided via the confidential Site Portal:

The Data Quality Level 1 Report provides detailed information related to the completeness of each data submission.
The Data Quality Level 2 Consistency Report is an interactive report that includes counts for various metrics and highlights if they increased, decreased, or stayed the same when compared to the most recent data submission.

Ensuring Accuracy of Electronic Health Record Data

Electronic health record data provides valuable information about patient status and treatment; however, it’s common for these data to have inaccuracies and/or lack specificity for certain clinical points of interest.

A state-of-the-art electronic case report form (eCRF) was developed to address this challenge. When a site submits electronic health record data, they receive a pre-populated eCRF in return. Participating sites will use the eCRFs to validate the accuracy of their data, and when needed, make edits and corrections. All data, including the corrected data, in the eCRF are considered the most reliable source of truth about a patient’s clinical presentation and care.

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.
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