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December 8, 2025BloodOpen Access

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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Authors

NGNajibah A. GaladanciUniversity of Alabama at BirminghamJKJulie KanterUniversity of Alabama at Birmingham

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Overview

Proof-of-concept work shows enhanced acute care data linkage in individuals with sickle cell disease, indicating better insights through privacy preserving methods.

Key Points

  • This research aims to explore the use of a privacy preserving technique for linking data across multiple sickle cell disease registries to assess acute care utilization.
  • Implemented a hashed identifier token for linking individuals across three SCD registries.
  • Conducted the study at the University of Alabama Birmingham (UAB) with IRB approval for data collections.
  • Evaluated acute care data utilization from the registries, including emergency department and hospital visits.
  • Identified 1080 unique individuals linked across three registries using the hashed identifier.
  • Showed discrepancies in acute care visits reported by different registries, with only GRNDaD capturing day hospital visits.
  • Demonstrated that leveraging multiple registries provided more accurate insights into acute care utilization compared to single data sources.

Cite This Study

Galadanci et al. (2025) studied this question.

synapsesocial.com/papers/69362f7d4fa91c937236e4a5https://doi.org/10.1182/blood-2025-1194
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Novel use of a Hashed Identifier Token for Sharing Sickle Cell Disease Data Without Sharing PHI (Preprint)2025
  2. 2Novel use of a Hash-Based Tokenization for Sharing Sickle Cell Disease Data Without Sharing PHI.2026
  3. 3Data validation and quality framework for building a european multimodal real-world dataset for clinical outcome research in sickle cell disease2025
  4. 4Sickle cell disease in europe: A cross-border real-world data analysis from the radeep registry2025
  5. 5Implementation of a comprehensive sickle cell center leads to improved access to care and decreased acute care use2026