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Table 1 Publicly accessible metadata repositories in the healthcare domain

From: Pragmatic MDR: a metadata repository with bottom-up standardization of medical metadata through reuse

Repository Created Data elements Scope and content
caDSR [14, 15] 2003 70,472 Defines a comprehensive set of standardized metadata descriptors for cancer research data. It contains common data elements from National Cancer Institute offices and partner organizations
CancerGrid [16] 2005–2010 Website not available anymore A shared catalogue of standard metadata for cancer trials. It contained common data elements from project partners
CoMetaR [17] 2017 1528 A platform for browsing, discussing, and editing metadata for respiratory diseases. It provides metadata concepts and an ontology
MDM Portal [13] 2011 578,299 Online infrastructure to for creating, analyzing, sharing, and reusing medical forms. It contains medical forms curated by medical experts
METeOR 2005 4668 Australia's repository for national metadata standards for the health, community services, and housing assistance sectors. It provides metadata creation tools and contains endorsed standards
Samply.MDR [18] 2015 672–1936 Open-source MDR implementation for managing and publishing metadata in a standardized and reusable way. It is used for different German study registers
USHIK 2006 29,646 Online, publicly accessible registry and repository of healthcare-related metadata, specifications, and standards. It contains information from numerous healthcare-related initiatives
  1. Repositories were identified via manual review and the PubMed search queries “metadata repository” and “metadata registry”. The content of the table was taken from the given citations and the project websites. Note that the definitions of data elements can vary. The data element counts were generated on 3 Mar 2021
  2. caDSR (https://cdebrowser.nci.nih.gov): The number of data elements was determined via a wildcard search with “*”
  3. CancerGrid (https://www.cs.ox.ac.uk/projects/cancergrid)
  4. CoMetaR (https://data.dzl.de/cometar/web): The provided SPARQL query to search items was used without a search term to identify all items. Unique elements starting with “http://data.dzl.de “ were included as data elements
  5. MDM Portal (https://medical-data-models.org): An internal query was used to determine the data elements
  6. METeOR (https://meteor.aihw.gov.au): The advanced search mechanism with item type Data Element was used to determine the number of data elements
  7. Samply.MDR (The following project websites were considered: https://mdr.ccp-it.dktk.dkfz.de/view.xhtml?namespace=dktk, https://mdr.miracum.de, https://mdr.osse-register.de, https://mdr.germanbiobanknode.de): The data elements were determined with the search mechanism excluding outdated elements
  8. USHIK (https://ushik.ahrq.gov): The page https://ushik.ahrq.gov/lists/DataElements?system=mdr provided an overview of all data elements