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Bill

SB 820

Relating to the establishment of the sickle cell disease registry.

89th Legislature (2025) Introduced by Borris Miles

Texas bill establishing a statewide sickle cell disease registry to centralize patient data for improved disease tracking, research, and health outcomes.

Referred to Health & Human Services
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Bill Summary · SB 820

Legislative bill overview

SB 820 establishes a sickle cell disease registry in Texas to collect and maintain data on individuals diagnosed with sickle cell disease. The registry would track patient information to improve disease monitoring, research, and public health response. This creates a centralized database under state health authority oversight.

Why is this important

Sickle cell disease disproportionately affects Black Americans and requires specialized, coordinated care. A statewide registry enables better epidemiological tracking, helps identify underserved populations, supports clinical research, and can improve health outcomes through improved care coordination. Currently, Texas lacks comprehensive data on its sickle cell population, limiting public health planning and resource allocation.

Potential points of contention

  • Privacy and data security concerns: Creating a disease-specific registry raises questions about patient privacy protections, data access restrictions, and who can use the information
  • Implementation costs and funding: Establishing and maintaining a registry requires ongoing state resources; bill language doesn't specify funding source
  • Scope of data collection: Unclear whether registry would be mandatory or voluntary participation, and what specific health data would be collected beyond diagnosis

Compiled from official sources — confirm details with the bill’s official record.

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