CureSCi Metadata Catalog–Making sickle cell studies findable

• DOI: 10.1371/journal.pone.0256248
• Publication Date: 2022-12-12T18:29:11Z
• Authors: Huaqin Pan; Cataia Ives; Meisha Mandal; Ying Qin; Tabitha Hendershot; Jen Popovic; Donald Brambilla; Jeran Stratford; Marsha Treadwell; Xin Wu; Barbara Kroner
• Keywords: 0301 basic medicine; 020; Sickle Cell Disease; Metadata; 0303 health sciences; General Science & Technology; Information Dissemination; Science; Q; R; Anemia; Hematology; Anemia, Sickle Cell; Sickle Cell; 3. Good health; 03 medical and health sciences; Rare Diseases; Library and Information Studies; Information and Computing Sciences; Medicine; Humans; Research Article

Objectives To adopt the FAIR principles ( F indable, A ccessible, I nteroperable, R eusable) to enhance data sharing, Cure Sickle Cell Initiative (CureSCi) MetaData Catalog (MDC) was developed make Disease (SCD) study datasets more Findable by curating metadata and making them available through an open-access web portal. Methods Study metadata, including protocol, collection forms, dictionaries, describe information about patient-level data. We curated key of 16 SCD studies in a three-tiered conceptual framework category, subcategory, element using ontologies controlled vocabularies organize variables. CureSCi MDC indexing enable effective browse search capabilities at three levels: study, Patient-Reported Outcome (PRO) Measures, levels. Results The offers several tools discover level, PRO elements. “Browse Studies,” Studies Measures,” Data Elements” allow users identify pre-defined categories. “Search Keyword” Element Concept Category” can be used separately or combination provide granularity refine results. This resource helps investigators find specific elements across public browsing/search tools, before going request procedures access datasets. makes browsing/searching information, elements, aiding reuse existing