Research Data Sharing IG
1.0.0 - CI Build International flag

Research Data Sharing IG, published by IEHR-Workgroup. This guide is not an authorized publication; it is the continuous build for version 1.0.0 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/InteropEHRate-project/research-data-sharing/ and changes regularly. See the Directory of published versions

Artifacts Summary

This page provides a list of the FHIR artifacts defined as part of this implementation guide.

Structures: Resource Profiles

These define constraints on FHIR resources for systems conforming to this implementation guide.

CodeSystem - Questionnaire - IEHR

This profile is used to represent the CodeSystems that encodes the questions and answers of a Questionnaire.

Cohort - IEHR

This profile is used to define constraints on the people, that can take part in the study

Questionnaire - IEHR

This profile is used to describe a questionnaire that the participant is expected to complete

QuestionnaireResponse - IEHR

This profile is used to describe the response a patient gave to a questionnaire

ReferenceResearchCenter-IEHR

This profile is used to describe a location, where parts of the study are conducted

ResearchStudy - IEHR

This profile is used to describe the study and contains references to the Cohort and ResearchLocation

Structures: Data Type Profiles

These define constraints on FHIR data types for systems conforming to this implementation guide.

CodeableConcept - IEHR

This profile is used to constrain the CodeableConcept datatype to use the Coding-IEHR.

Coding - IEHR

This profile is used to extend the Coding datatype with an operator extension.

DataRequirement - IEHR

This profile is used to describes one datapoint that is gathered as part of the study and can contain a Frequency Extension

Narrative - IEHR

This profile allows the Narrative to be extended with versions in different languages

Structures: Extension Definitions

These define constraints on FHIR data types for systems conforming to this implementation guide.

Anonymization Extension-IEHR

This Extension is used to describes the type of anonymization required in the ResearchStudy

AutomaticallyGenerated Extension-IEHR

This Extension is used to describes that the coding was automatically generated by a translation service

CodeSystemExtension - IEHR

This extension is used to extend the Questionnaire with the CodeSystem that is used to encode the questions and answers in the Questionnaire.

DataSetDefinition - IEHR

This extension is used to contain all DataRequirement used in the study

EnrollmentPeriod - IEHR

This extension is used to define the period during which participants can enroll in the ResearchStudy

Frequency Extension-IEHR

This Extension is used to describe how often the value specified in the DataRequirement should be transmitted

Function Extension - IEHR

This Extension is used to describe how requested data should be processed

NarrativeExtension - IEHR

This Extension is used to extend the Narrative with versions in different languages

OperatorExtension - IEHR

This extension is used to add the Operators to the Coding-IEHR.

QuestionnaireExtension - IEHR

This extension is used to reference a Questionnaire with a deadline and a reminderFrequency in the RDD

Terminology: Value Sets

These define sets of codes used by systems conforming to this implementation guide.

Anonymization ValueSet

This ValueSet contains the types of anonymization that are supported by the ResearchStudy

Characteristic Codes ValueSet

This ValueSet contains examples for the Group.characteristic codes

CodingOperatorValueSet-IEHR

This ValueSet contains codes that can be used for the operator in Coding-IEHR

Function Codes ValueSet

This ValueSet contains the available function codes for the FunctionExtension

Terminology: Code Systems

These define new code systems used by systems conforming to this implementation guide.

Possible codes for Coding-IEHR

This CodeSystem contains possible codes that can be used as operators in Codings

Possible codes for GroupCharacteristic

This CodeSystem contains possible codes that can be used in Group.characteristics

Possible codes for the Function Extension

This CodeSystem contains the possible functions that can be used in the function extension

Types of Anonymization

This CodeSystem contains the types of anonymization that are supported by the ResearchStudy

Example: Example Instances

These are example instances that show what data produced and consumed by systems conforming with this implementation guide might look like.

Cohort Example - 1

This resource is an example for a Cohort, that is used by the ResearchStudy-IEHR Profile in the enrollment attribute

Cohort Operator - 1

This resource is an example for a Cohort, that uses the Operator Extension to represent a group of codes

Endpoint Example - 1

This resource is an example for an Endpoint, that is used by the Location Profile

Location Example - 1

This resource is an example for a Location, that is used by the ResearchStudy-IEHR Profile in the site attribute

Location Example - CHU

This resource is an example for a Location, that is used by the ResearchStudy-IEHR Profile in the site attribute

Location Example - FTGM

This resource is an example for a Location, that is used by the ResearchStudy-IEHR Profile in the site attribute

Questionnaire Example - CRF Intervall

Example for an Questionnaire using the base profile

Questionnaire Example - CRF Intervall Coded

Example for an Questionnaire that uses the Questionnaire-IEHR profile and an internal codesystem

QuestionnaireResponse Example - CRF Intervall

Example for a response to an Questionnaire

ResearchStudy Example - 1

This bundle contains an example for a ResearchStudy

ResearchStudy Example - CRP

This bundle contains an example for a ResearchStudy

ResearchStudy Example - Contained Questionnaire

This bundle contains an example for a ResearchStudy with a Questionnaire contained in the same bundle

ResearchStudy Example - Expired

This bundle contains an example for an expired ResearchStudy

ResearchStudy Example - FTGM

This bundle contains an example for a ResearchStudy created with data from FTGM

ResearchStudy Example - FTGM - Frequency

This bundle contains an example for a ResearchStudy created with data from FTGM and the request for an one-time data transmission.

ResearchStudy Example - Function

This bundle contains an example for a ResearchStudy with a function on the DataRequirements

ResearchStudy Example - NoMatch

This bundle contains an example for a ResearchStudy with no matches

ResearchStudy Example - PDF

This bundle contains an example for a ResearchStudy with an related pdf containing a description of the Study

ResearchStudy Example - Reference

This example shows a ResearchStudy, that uses references to fill the attributes

VitalSign Example - Anonymized

This bundle contains an example for a anonymited VitalSign

Other

These are resources that are used within this implementation guide that do not fit into one of the other categories.

Coding Example - AutomaticallyGenerated Code

Example for a Coding with an automatically generated code.