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CureSCi Metadata Catalog-Making sickle cell studies findable.

Huaqin Pan1, Cataia Ives1, Meisha Mandal1

  • 1RTI International, Research Triangle Park, Durham, NC, United States of America.

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|December 12, 2022
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Summary

The Cure Sickle Cell Initiative (CureSCi) developed a MetaData Catalog (MDC) to improve data sharing for Sickle Cell Disease (SCD) studies. This catalog enhances data findability through curated metadata and an open-access portal, promoting data reuse.

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Area of Science:

  • Biomedical Informatics
  • Data Science
  • Genomics and Precision Medicine

Background:

  • Sickle Cell Disease (SCD) research generates vast datasets, necessitating robust data sharing mechanisms.
  • Adhering to FAIR principles (Findable, Accessible, Interoperable, Reusable) is crucial for maximizing the utility of SCD research data.
  • Existing data repositories may lack comprehensive metadata, hindering efficient data discovery and reuse.

Purpose of the Study:

  • To develop the Cure Sickle Cell Initiative (CureSCi) MetaData Catalog (MDC) to enhance the findability of Sickle Cell Disease (SCD) study datasets.
  • To implement FAIR data principles by curating and organizing SCD study metadata.
  • To provide an open-access web portal for improved data sharing and accessibility.

Main Methods:

  • Curated key metadata from 16 SCD studies, including protocols, data collection forms, and data dictionaries.
  • Organized study variables using a three-tiered conceptual framework (category, subcategory, data element) with ontologies and controlled vocabularies.
  • Developed the CureSCi MDC with indexing for browse and search capabilities at study, Patient-Reported Outcome (PRO) Measure, and data element levels.

Main Results:

  • The CureSCi MDC provides browse and search tools for discovering studies by level, PRO Measures, and data elements.
  • Users can identify studies via pre-defined conceptual categories and refine searches using keywords or concept categories.
  • The MDC facilitates the discovery of specific data elements across studies, enabling efficient access to information before formal data request procedures.

Conclusions:

  • The CureSCi MDC significantly enhances the findability of SCD studies and their associated data elements.
  • The catalog promotes data reuse by making study information, PRO Measures, and data elements easily discoverable.
  • This initiative supports the broader adoption of FAIR data principles within the SCD research community.