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Related Experiment Video

Updated: Oct 4, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
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GRNDaD: big data and sickle cell disease.

Sophie Lanzkron1, Deepa Manwani2, Payal Desai3

  • 1Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.

Blood Advances
|February 8, 2022
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Summary
This summary is machine-generated.

A new registry, the Globin Regional Data and Discovery (GRNDaD) registry, collects comprehensive data from sickle cell disease (SCD) patients. This resource aims to advance precision medicine and improve care for the SCD population.

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Area of Science:

  • Biomedical Informatics
  • Genetics
  • Public Health

Background:

  • Precision medicine relies on big data, but its application in sickle cell disease (SCD) requires robust participant registries.
  • Existing multisite registries for SCD are lacking, hindering customized therapeutic approaches.

Purpose of the Study:

  • To establish the Globin Regional Data and Discovery (GRNDaD) registry for prospective, high-quality data collection in the SCD population.
  • To enhance adherence to guideline-based care and facilitate quality improvement initiatives across multiple sites.
  • To create a collaborative platform for real-time investigation of therapies and research into SCD natural history.

Main Methods:

  • Development of a collaborative, multisite registry (GRNDaD) to enroll willing, fully phenotyped participants with SCD.
  • Prospective data curation focusing on the evolving SCD population.
  • Utilizing GRNDaD as a shared platform for quality improvement and research.

Main Results:

  • GRNDaD has successfully enrolled a significant number of participants living with SCD.
  • The registry facilitates collaborative research and quality improvement activities across numerous sites.
  • GRNDaD is designated as the data collection tool for key national SCD initiatives.

Conclusions:

  • The GRNDaD registry is a vital resource for advancing precision medicine in sickle cell disease.
  • It enables identification of genetic markers, prediction of outcomes, and a deeper understanding of SCD's natural history.
  • GRNDaD supports collaborative efforts to address unmet clinical needs and improve patient care.