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NCPI FHIR Study Summary Implmentation Guide

Profiles and guidelines for storing Data-Dictionaries, Summary Statistics and other forms of Study Meta-data in FHIR.

By storing meta data about the study, including a data-dictionary, details about transformations and summary data in a publicly accessible server, FHIR can be used to more easily discover datasets with that fit with researchers' interests.

The key concepts include:

  • Data Dictionary - Profiles to add clarity to the use of ActivityDefinition and Observation Definition
  • Guidance on using ConceptMaps to document transformations from dataset level variables to public ontologies
  • Profile to enforce basic rules and guidence on proving support for summary data in FHIR
  • Guidance on linking row-level data back to Data Dictionary elements like Study Variables and their Codes

The current version of the IG can be viewed here.