Table 1.
Publicly accessible metadata repositories in the healthcare domain
| 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 |
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
caDSR (https://cdebrowser.nci.nih.gov): The number of data elements was determined via a wildcard search with “*”
CancerGrid (https://www.cs.ox.ac.uk/projects/cancergrid)
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
MDM Portal (https://medical-data-models.org): An internal query was used to determine the data elements
METeOR (https://meteor.aihw.gov.au): The advanced search mechanism with item type Data Element was used to determine the number of data elements
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
USHIK (https://ushik.ahrq.gov): The page https://ushik.ahrq.gov/lists/DataElements?system=mdr provided an overview of all data elements