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March 21, 2026Blood AdvancesOpen Access

Novel use of a Hash-Based Tokenization for Sharing Sickle Cell Disease Data Without Sharing PHI.

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Authors

NGNajibah A. GaladanciUniversity of Alabama at BirminghamGHGerhard Stefan HellemannUniversity of Alabama at BirminghamSWSamuel David WashkoKimberly-Clark (Canada)

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Implication

Novel method integrates sickle cell disease registries while protecting patient identity, enhancing research opportunities.

Key Points

  • The aim was to develop a privacy-preserving technique to link major sickle cell disease registries securely.
  • Leveraged three major sickle cell disease data collection efforts for integration.
  • Used SHA-256 hashing to generate identity tokens without sharing protected health information.
  • Conducted deterministic matching of hashed tokens to identify unique individuals.
  • Identified 8,026 records across the three registries.
  • Matched 1,080 unique individuals appearing in at least two datasets.
  • Demonstrated successful integration of multiple sickle cell disease registries while preserving privacy.

Cite This Study

Galadanci et al. (2026) studied this question.

synapsesocial.com/papers/69be35ba6e48c4981c67426dhttps://doi.org/10.1182/bloodadvances.2025019450
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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 privacy-preserving hashed identifier to match individuals in different sickle cell disease registries and assess acute care utilization2025
  3. 3Data validation and quality framework for building a european multimodal real-world dataset for clinical outcome research in sickle cell disease2025
  4. 4The Sickle Africa Data Coordinating Centre (SADaCC): a data science hub for interdisciplinary sickle cell disease research and training2026 · 1 citations
  5. 5Making SCD Warriors Visible: A Public Health Visualization Project2025