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Common data model for sickle cell disease surveillance: considerations and implications.

Matthew P Smeltzer1, Sarah L Reeves2, William O Cooper3,4

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Summary

The Centers for Disease Control and Prevention (CDC) established a pilot Sickle Cell Data Collection (SCDC) informatics infrastructure. This standardized data collection across states, improving surveillance for this rare disease.

Keywords:
data modelsickle cellsurveillance

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Area of Science:

  • Public Health Surveillance
  • Health Informatics
  • Rare Disease Research

Background:

  • Population-level data on sickle cell disease (SCD) in the U.S. is limited.
  • The Centers for Disease Control and Prevention (CDC) initiated state-level Sickle Cell Data Collection Programs (SCDC) to address this gap.
  • Standardization of data collection processes across states is crucial for effective SCD surveillance.

Purpose of the Study:

  • To describe the establishment and maintenance of a common informatics infrastructure for SCD surveillance.
  • To identify key data elements essential for public health reporting of SCD.
  • To develop a standardized approach for rare disease data collection.

Main Methods:

  • Development of a pilot common informatics infrastructure for the SCDC programs.
  • Implementation of a common data model to standardize data across participating states.
  • Identification of key data elements for public health reporting.

Main Results:

  • A pilot common informatics infrastructure was successfully implemented.
  • The infrastructure allows for pooling of data across states for comparative analysis.
  • Annual Core Surveillance Data reports are compiled using aggregate data submitted by states to the CDC.

Conclusions:

  • The pilot SCDC common informatics infrastructure strengthens the distributed data network.
  • This initiative provides a blueprint for similar data collection and surveillance efforts in other rare diseases.
  • Standardized informatics infrastructure is key to enhancing rare disease surveillance and research.