CureSCi Metadata Catalog-Making sickle cell studies findable.
Huaqin PanCataia IvesMeisha MandalYing QinTabitha HendershotJen PopovicDonald BrambillaJeran StratfordMarsha J TreadwellXin WuBarbara KronerPublished in: PloS one (2022)
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.