Overview

The Metadata Catalog (MDC) was designed to be a resource for curation of data elements and study documentation for past and current studies of sickle cell disease populations. The CureSCi Metadata Catalog is organized by the National Library of Medicine (NLM)’s Medical Subject Headings (MeSH) and the Sickle Cell Disease Ontology. Users can identify conceptually related variables across research concepts and identify studies with datasets available for secondary or validation analysis.

The CureSCi MDC provides a web-based public tool to help investigators answer the following questions when designing a new study or when doing a secondary data analysis:

• What data elements were collected by the studies?
• Which study variables are mapped to the CureSCi Core CDE?
• What are the number of participants for selected data elements?

The MDC has dozens of searchable fields for study-level metadata (e.g., study design, inclusion/exclusion criteria, outcomes) and several tools to enable users to:

• Browse individual studies.
• Browse multiple studies by concept, CureSC Core CDE, and Patient-Reported Outcome (PRO) Measures.
• Search study metadata by keyword.
• Search data elements by concept.

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 at NHLBI BioData Catalyst.