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. 2022 Dec 12;17(12):e0256248.
doi: 10.1371/journal.pone.0256248. eCollection 2022.

CureSCi Metadata Catalog-Making sickle cell studies findable

Huaqin Pan  1 , Cataia Ives  1 , Meisha Mandal  1 , Ying Qin  1 , Tabitha Hendershot  1 , Jen Popovic  1 , Donald Brambilla  1 , Jeran Stratford  1 , Marsha Treadwell  2 , Xin Wu  1 , Barbara Kroner  1
Affiliations

CureSCi Metadata Catalog-Making sickle cell studies findable

Huaqin Pan et al. PLoS One. .

Abstract

Objectives: To adopt the FAIR principles (Findable, Accessible, Interoperable, Reusable) to enhance data sharing, the Cure Sickle Cell Initiative (CureSCi) MetaData Catalog (MDC) was developed to make Sickle Cell Disease (SCD) study datasets more Findable by curating study metadata and making them available through an open-access web portal.

Methods: Study metadata, including study protocol, data collection forms, and data dictionaries, describe information about study patient-level data. We curated key metadata of 16 SCD studies in a three-tiered conceptual framework of category, subcategory, and data element using ontologies and controlled vocabularies to organize the study variables. We developed the CureSCi MDC by indexing study metadata to enable effective browse and search capabilities at three levels: study, Patient-Reported Outcome (PRO) Measures, and data element levels.

Results: The CureSCi MDC offers several browse and search tools to discover studies by study level, PRO Measures, and data elements. The "Browse Studies," "Browse Studies by PRO Measures," and "Browse Studies by Data Elements" tools allow users to identify studies through pre-defined conceptual categories. "Search by Keyword" and "Search Data Element by Concept Category" can be used separately or in combination to provide more granularity to refine the search results. This resource helps investigators find information about specific data elements across studies using public browsing/search tools, before going through data request procedures to access controlled datasets. The MDC makes SCD studies more Findable through browsing/searching study information, PRO Measures, and data elements, aiding in the reuse of existing SCD data.

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Conflict of interest statement

The authors have declared that no competing interests exist.

Figures

Fig 1
Fig 1. Distribution of 16 curated studies in the Metadata Catalog by experimental design, collected variables, and patient size, available on the CureSCi MDC homepage.
A. Proportion of curated studies by study design. B. Distribution of study variables (>10,000) across the curated studies. C. Distribution of subjects (>20,000) among the curated studies. Republished from https://curesicklecell.rti.org/ under a CC BY license, with permission from Public Library of Science (PLOS), original copyright 2022.
Fig 2
Fig 2. The “Browse Studies by Data Element” tool.
The tool dynamically displays studies matching the selections of data elements organized in the three-tiered classification framework.
Fig 3
Fig 3. The “Browse Studies by Data Element” tool.
The “Show Variable” feature lists study variables information. Republished from https://curesicklecell.rti.org/ under a CC BY license, with permission from Public Library of Science (PLOS), original copyright 2022.
Fig 4
Fig 4. The “Browse Studies by PRO Measures” tool.
This tool dynamically displays studies matching the selected PRO Measures. Republished from https://curesicklecell.rti.org/ under a CC BY license, with permission from Public Library of Science (PLOS), original copyright 2022.
Fig 5
Fig 5. Advanced search combines options to search by keyword and prepopulated conceptual categories.
Study identification can be flexibly refined by using keyword searches within a concept category/subcategory/data element or metadata field. The two search modalities may be used independently or in combination with AND/OR/NOT relations. Republished from https://curesicklecell.rti.org/ under a CC BY license, with permission from Public Library of Science (PLOS), original copyright 2022.
See this image and copyright information in PMC

References

    1. Hassell KL. Population estimates of sickle cell disease in the U.S. Am J Prev Med. 2010;38(4 Suppl):S512–21. doi: 10.1016/j.amepre.2009.12.022 - DOI - PubMed
    1. Curesickle.org [Internet]. It’s time to rewrite the story of sickle cell. Available from https://curesickle.org/
    1. Eckman JR, Hassell KL, Huggins W, Werner EM, Klings ES, Adams RJ, et al.. Standard measures for sickle cell disease research: the PhenX Toolkit sickle cell disease collections. Blood Adv. 2017. Dec 15;1(27):2703–11. doi: 10.1182/bloodadvances.2017010702 - DOI - PMC - PubMed
    1. Farrell AT, Panepinto J, Carroll CP, Darbari DS, Desai AA, King AA, et al.. End points for sickle cell disease clinical trials: patient-reported outcomes, pain, and the brain. Blood Adv. 2019. Dec 10;3(23):3982–4001. doi: 10.1182/bloodadvances.2019000882 - DOI - PMC - PubMed
    1. Farrell AT, Panepinto J, Desai AA, Kassim AA, Lebensburger J, Walters MC, et al.. End points for sickle cell disease clinical trials: renal and cardiopulmonary, cure, and low-resource settings. Blood Adv. 2019. Dec 10;3(23):4002–20. doi: 10.1182/bloodadvances.2019000883 ; PMCID: PMC6963248. - DOI - PMC - PubMed

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