NCPI FHIR Implementation Guide
0.2.0 - ci-build
NCPI FHIR Implementation Guide - Local Development build (v0.2.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions
Official URL: https://nih-ncpi.github.io/ncpi-fhir-ig/StructureDefinition/common-data-model-research-study | Version: 0.2.0 | |||
Active as of 2024-03-04 | Computable Name: CdmResearchStudy |
The CDM Research Study is a logical model intended to represent the real world concept of a scientific research study to be used when describing NCPI Profiles and how their attributes are mapped to actual study properties.
With regard to this Implementation Guide, a research study is a collection of data gathered through a systematic investigation aimed at acquiring insights into healthcare-related topics. A research study can encompass a standalone unit or consists of sub-studies often hosted in public databases, such as dbGaP. The study, or studies, may or may not be integrated into a broader consortia of research studies and is composed of the following elements described below.
Usage:
Description of Profiles, Differentials, Snapshots and how the different presentations work.
This structure is derived from Base
Name | Flags | Card. | Type | Description & Constraints |
---|---|---|---|---|
common-data-model-research-study | 0..* | Base | CDM Research Study Instances of this logical model are not marked to be the target of a Reference | |
consortium | Σ | 0..1 | string | Consortium |
accession | Σ | 1..1 | string | Study Accession Number |
name | Σ | 1..1 | string | Study Name |
substudies | 0..* | ResearchStudy | Substudies | |
description | 1..1 | string | The study's description | |
disease_focus | 0..* | Coding | Disease or focus of the study | |
attribution | 0..* | string | Attribution | |
weblinks | 0..* | string | Web Links | |
study_design | 0..* | Coding | Study Design | |
study_type | 0..* | Coding | Study Type | |
citation | 0..* | string | Citation(s) associated with this study | |
study_documents | 0..* | string | Study Documents | |
Documentation for this format |
Name | Flags | Card. | Type | Description & Constraints |
---|---|---|---|---|
common-data-model-research-study | 0..* | Base | CDM Research Study Instances of this logical model are not marked to be the target of a Reference | |
consortium | Σ | 0..1 | string | Consortium |
accession | Σ | 1..1 | string | Study Accession Number |
name | Σ | 1..1 | string | Study Name |
substudies | 0..* | ResearchStudy | Substudies | |
description | 1..1 | string | The study's description | |
disease_focus | 0..* | Coding | Disease or focus of the study | |
attribution | 0..* | string | Attribution | |
weblinks | 0..* | string | Web Links | |
study_design | 0..* | Coding | Study Design | |
study_type | 0..* | Coding | Study Type | |
citation | 0..* | string | Citation(s) associated with this study | |
study_documents | 0..* | string | Study Documents | |
Documentation for this format |
Name | Flags | Card. | Type | Description & Constraints |
---|---|---|---|---|
common-data-model-research-study | 0..* | Base | CDM Research Study Instances of this logical model are not marked to be the target of a Reference | |
consortium | Σ | 0..1 | string | Consortium |
accession | Σ | 1..1 | string | Study Accession Number |
name | Σ | 1..1 | string | Study Name |
substudies | 0..* | ResearchStudy | Substudies | |
description | 1..1 | string | The study's description | |
disease_focus | 0..* | Coding | Disease or focus of the study | |
attribution | 0..* | string | Attribution | |
weblinks | 0..* | string | Web Links | |
study_design | 0..* | Coding | Study Design | |
study_type | 0..* | Coding | Study Type | |
citation | 0..* | string | Citation(s) associated with this study | |
study_documents | 0..* | string | Study Documents | |
Documentation for this format |
This structure is derived from Base
Differential View
This structure is derived from Base
Name | Flags | Card. | Type | Description & Constraints |
---|---|---|---|---|
common-data-model-research-study | 0..* | Base | CDM Research Study Instances of this logical model are not marked to be the target of a Reference | |
consortium | Σ | 0..1 | string | Consortium |
accession | Σ | 1..1 | string | Study Accession Number |
name | Σ | 1..1 | string | Study Name |
substudies | 0..* | ResearchStudy | Substudies | |
description | 1..1 | string | The study's description | |
disease_focus | 0..* | Coding | Disease or focus of the study | |
attribution | 0..* | string | Attribution | |
weblinks | 0..* | string | Web Links | |
study_design | 0..* | Coding | Study Design | |
study_type | 0..* | Coding | Study Type | |
citation | 0..* | string | Citation(s) associated with this study | |
study_documents | 0..* | string | Study Documents | |
Documentation for this format |
Key Elements View
Name | Flags | Card. | Type | Description & Constraints |
---|---|---|---|---|
common-data-model-research-study | 0..* | Base | CDM Research Study Instances of this logical model are not marked to be the target of a Reference | |
consortium | Σ | 0..1 | string | Consortium |
accession | Σ | 1..1 | string | Study Accession Number |
name | Σ | 1..1 | string | Study Name |
substudies | 0..* | ResearchStudy | Substudies | |
description | 1..1 | string | The study's description | |
disease_focus | 0..* | Coding | Disease or focus of the study | |
attribution | 0..* | string | Attribution | |
weblinks | 0..* | string | Web Links | |
study_design | 0..* | Coding | Study Design | |
study_type | 0..* | Coding | Study Type | |
citation | 0..* | string | Citation(s) associated with this study | |
study_documents | 0..* | string | Study Documents | |
Documentation for this format |
Snapshot View
Name | Flags | Card. | Type | Description & Constraints |
---|---|---|---|---|
common-data-model-research-study | 0..* | Base | CDM Research Study Instances of this logical model are not marked to be the target of a Reference | |
consortium | Σ | 0..1 | string | Consortium |
accession | Σ | 1..1 | string | Study Accession Number |
name | Σ | 1..1 | string | Study Name |
substudies | 0..* | ResearchStudy | Substudies | |
description | 1..1 | string | The study's description | |
disease_focus | 0..* | Coding | Disease or focus of the study | |
attribution | 0..* | string | Attribution | |
weblinks | 0..* | string | Web Links | |
study_design | 0..* | Coding | Study Design | |
study_type | 0..* | Coding | Study Type | |
citation | 0..* | string | Citation(s) associated with this study | |
study_documents | 0..* | string | Study Documents | |
Documentation for this format |
This structure is derived from Base
Other representations of profile: CSV, Excel
Identifiers serve to allow researchers to identify exactly which study is being described. This includes Accession Numbers for studies where the data has been submitted to a public database such as dbGaP. Other identifiers may include IDs that differentiate the study from consortium peer studies and … The identifiers may include:
For the purposes of this model, we’ll refer to all of these as accession ids.
Each study will have a name as well as a detailed description.
Studies will have one or more focus which may be either a disease or a phenotype.
These sub-studies may be related to data-use restrictions such as how participants were consented or the types of data that were captured for study.
A study may be a member of an organization, such as a consortium.