Published on: December 6, 2025

Novel Technique Preserves Patient Privacy and Data Integrity Across Sickle Cell Disease Registries

Researchers from the University of Alabama, Birmingham, created a privacy preserving technique that links individuals with sickle cell disease across three different registries, improving data accuracy and highlighting potential registry data gaps.

The researchers used identity tokens, or coding which uses basic pre-selected identifiers, to create a unique de-identified ‘fingerprint’ or hash for each patient used to link patients across three registries: the CDC Sickle Cell Data Collection Project (ALSTATE), the ASH Research Collaborative (ASH RC) Data Hub, and the Globin Research Network for Data and Discovery (GRNDaD) registry.

The project included 8,026 records across the three registries. The program identified 1,080 individuals with records across at least two data sets and 340 individuals across all three sets. Researchers then compared acute care visits across the data sets, finding discrepancies among the different data sets reported.

This project shows that linking data across SCD data programs is feasible while protecting patient privacy, and that the use of multiple data sets can help further understanding of patient outcomes.

1194: Novel Use of a Privacy-preserving Hashed Identifier to Match Individuals in Different Sickle Cell Disease Registries and Assess Acute Care Utilization

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